JONS February 2013 by The Oncology Nurse

FEBRUARY 2013

www.AONNonline.org

CLINICAL PRACTICE Assuring Lung Nodule Surveillance: A Navigation Model

SURVIVORSHIP

VOL 4, NO 1

ADDRESSING DISPARITIES Navigation Needs for Breast Health and Breast Cancer Populations in Low- and Middle-Income Countries

Improving Cancer Survivorship for Adolescents and Young Adults

NAVIGATING PATIENTS ACROSS THE CONTINUUM OF CANCER CARE

ÂŠ 2013 Green Hill Healthcare Communications, LLC

The median age of patients in the VISTAâ&#x20AC; trial was 71 years (range: 48-91).

Survival never gets old VELCADE® (bortezomib) delivered >13-month overall survival advantage in combination with MP* vs MP alone for previously untreated multiple myeloma (median 56.4 vs 43.1 months [HR=0.695; 95% CI, 0.57-0.85; p<0.05]; 60.1-month median follow-up†)

Approved for subcutaneous and IV administration‡ VELCADE® (bortezomib) Indication and Important Safety Information INDICATION VELCADE (bortezomib) is indicated for the treatment of patients with multiple myeloma.

CONTRAINDICATIONS VELCADE is contraindicated in patients with hypersensitivity (not including local reactions) to bortezomib, boron, or mannitol, including anaphylactic reactions. VELCADE is contraindicated for intrathecal administration.

WARNINGS, PRECAUTIONS, AND DRUG INTERACTIONS Peripheral neuropathy: Manage with dose modification or discontinuation. Patients with preexisting severe neuropathy should be treated with VELCADE only after careful risk-benefit assessment. ▼ Hypotension: Use caution when treating patients taking antihypertensives, with a history of syncope, or with dehydration. ▼ Cardiac toxicity: Worsening of and development of cardiac failure have occurred. Closely monitor patients with existing heart disease or risk factors for heart disease. ▼ Pulmonary toxicity: Acute respiratory syndromes have occurred. Monitor closely for new or worsening symptoms. ▼ Posterior reversible encephalopathy syndrome: Consider MRI imaging for onset of visual or neurological symptoms; discontinue VELCADE if suspected. ▼ Gastrointestinal toxicity: Nausea, diarrhea, constipation, and vomiting may require use of antiemetic and antidiarrheal medications or fluid replacement. ▼ Thrombocytopenia or Neutropenia: Monitor complete blood counts regularly throughout treatment. ▼

Tumor lysis syndrome: Closely monitor patients with high tumor burden. ▼ Hepatic toxicity: Monitor hepatic enzymes during treatment. ▼ Embryo-fetal risk: Women should avoid becoming pregnant while being treated with VELCADE. Advise pregnant women of potential embryo-fetal harm. ▼ Closely monitor patients receiving VELCADE in combination with strong CYP3A4 inhibitors. Avoid concomitant use of strong CYP3A4 inducers. ▼

ADVERSE REACTIONS Most commonly reported adverse reactions (incidence ≥20%) in clinical studies include nausea, diarrhea, thrombocytopenia, neutropenia, peripheral neuropathy, fatigue, neuralgia, anemia, leukopenia, constipation, vomiting, lymphopenia, rash, pyrexia, and anorexia. Please see Brief Summary for VELCADE on next page. *Melphalan+prednisone. †

VISTA: a randomized, open-label, international phase 3 trial (N=682) evaluating the efficacy and safety of VELCADE administered intravenously in combination with MP vs MP in previously untreated multiple myeloma (MM). The primary endpoint was TTP. Secondary endpoints were CR, ORR, PFS, and overall survival. At a prespecified interim analysis (median follow-up 16.3 months), VELCADE+MP resulted in significantly superior results for TTP (median 20.7 months with VELCADE+MP vs 15.0 months with MP [p =0.000002]), PFS, overall survival, and ORR. Further enrollment was halted and patients receiving MP were offered VELCADE in addition. Updated analyses were performed. ‡ The reconstituted concentration for subcutaneous administration (2.5 mg/mL) is greater than the reconstituted concentration for IV administration (1 mg/mL).

Living Proof

Brief Summary INDICATIONS: VELCADE® (bortezomib) for Injection is indicated for the treatment of patients with multiple myeloma. VELCADE for Injection is indicated for the treatment of patients with mantle cell lymphoma who have received at least 1 prior therapy. CONTRAINDICATIONS: VELCADE is contraindicated in patients with hypersensitivity (not including local reactions) to bortezomib, boron, or mannitol, including anaphylactic reactions. VELCADE is contraindicated for intrathecal administration. WARNINGS AND PRECAUTIONS: Peripheral Neuropathy: VELCADE treatment causes a peripheral neuropathy that is predominantly sensory; however, cases of severe sensory and motor peripheral neuropathy have been reported. Patients with pre-existing symptoms (numbness, pain, or a burning feeling in the feet or hands) and/or signs of peripheral neuropathy may experience worsening peripheral neuropathy (including ≥Grade 3) during treatment with VELCADE. Patients should be monitored for symptoms of neuropathy, such as a burning sensation, hyperesthesia, hypoesthesia, paresthesia, discomfort, neuropathic pain or weakness. In the Phase 3 relapsed multiple myeloma trial comparing VELCADE subcutaneous vs intravenous, the incidence of Grade ≥2 peripheral neuropathy events was 24% for subcutaneous and 39% for intravenous. Grade ≥3 peripheral neuropathy occurred in 6% of patients in the subcutaneous treatment group, compared with 15% in the intravenous treatment group. Starting VELCADE subcutaneously may be considered for patients with pre-existing or at high risk of peripheral neuropathy. Patients experiencing new or worsening peripheral neuropathy during VELCADE therapy may require a decrease in the dose and/or a less dose-intense schedule. In the VELCADE vs dexamethasone phase 3 relapsed multiple myeloma study, improvement in or resolution of peripheral neuropathy was reported in 48% of patients with ≥Grade 2 peripheral neuropathy following dose adjustment or interruption. Improvement in or resolution of peripheral neuropathy was reported in 73% of patients who discontinued due to Grade 2 neuropathy or who had ≥Grade 3 peripheral neuropathy in the phase 2 multiple myeloma studies. The long-term outcome of peripheral neuropathy has not been studied in mantle cell lymphoma. Hypotension: The incidence of hypotension (postural, orthostatic, and hypotension NOS) was 8%. These events are observed throughout therapy. Caution should be used when treating patients with a history of syncope, patients receiving medications known to be associated with hypotension, and patients who are dehydrated. Management of orthostatic/postural hypotension may include adjustment of antihypertensive medications, hydration, and administration of mineralocorticoids and/or sympathomimetics. Cardiac Toxicity: Acute development or exacerbation of congestive heart failure and new onset of decreased left ventricular ejection fraction have occurred during VELCADE therapy, including reports in patients with no risk factors for decreased left ventricular ejection fraction. Patients with risk factors for, or existing, heart disease should be closely monitored. In the relapsed multiple myeloma study of VELCADE vs dexamethasone, the incidence of any treatment-related cardiac disorder was 8% and 5% in the VELCADE and dexamethasone groups, respectively. The incidence of adverse reactions suggestive of heart failure (acute pulmonary edema, pulmonary edema, cardiac failure, congestive cardiac failure, cardiogenic shock) was ≤1% for each individual reaction in the VELCADE group. In the dexamethasone group, the incidence was ≤1% for cardiac failure and congestive cardiac failure; there were no reported reactions of acute pulmonary edema, pulmonary edema, or cardiogenic shock. There have been isolated cases of QT-interval prolongation in clinical studies; causality has not been established. Pulmonary Toxicity: Acute Respiratory Distress Syndrome (ARDS) and acute diffuse infiltrative pulmonary disease of unknown etiology, such as pneumonitis, interstitial pneumonia, and lung infiltration have occurred in patients receiving VELCADE. Some of these events have been fatal. In a clinical trial, the first two patients given high-dose cytarabine (2 g/m2 per day) by continuous infusion with daunorubicin and VELCADE for relapsed acute myelogenous leukemia died of ARDS early in the course of therapy. There have been reports of pulmonary hypertension associated with VELCADE administration in the absence of left heart failure or significant pulmonary disease. In the event of new or worsening cardiopulmonary symptoms, consider interrupting VELCADE until a prompt, comprehensive, diagnostic evaluation is conducted. Posterior Reversible Encephalopathy Syndrome (PRES): Posterior Reversible Encephalopathy Syndrome (PRES; formerly termed Reversible Posterior Leukoencephalopathy Syndrome (RPLS)) has occurred in patients receiving VELCADE. PRES is a rare, reversible, neurological disorder, which can present with seizure, hypertension, headache, lethargy, confusion, blindness, and other visual and neurological disturbances. Brain imaging, preferably MRI (Magnetic Resonance Imaging), is used to confirm the diagnosis. In patients developing PRES, discontinue VELCADE. The safety of reinitiating VELCADE therapy in patients previously experiencing PRES is not known. Gastrointestinal Toxicity: VELCADE treatment can cause nausea, diarrhea, constipation, and vomiting, sometimes requiring use of antiemetic and antidiarrheal medications. Ileus can occur. Fluid and electrolyte replacement should be administered to prevent dehydration. Interrupt VELCADE for severe symptoms. Thrombocytopenia/Neutropenia: VELCADE is associated with thrombocytopenia and neutropenia that follow a cyclical pattern, with nadirs occurring following the last dose of each cycle and typically recovering prior to initiation of the subsequent cycle. The cyclical pattern of platelet and neutrophil decreases and recovery remained consistent over the 8 cycles of twice-weekly dosing, and there was no evidence of cumulative thrombocytopenia or neutropenia. The mean platelet count nadir measured was approximately 40% of baseline. The severity of thrombocytopenia was related to pretreatment platelet count. In the relapsed multiple myeloma study of VELCADE vs dexamethasone, the incidence of bleeding (≥Grade 3) was 2% on the VELCADE arm and <1% on the dexamethasone arm. Complete blood counts (CBC) should be monitored frequently during treatment with VELCADE. Platelet counts should be monitored prior to each dose of VELCADE. Patients experiencing thrombocytopenia may require change in the dose and schedule of VELCADE. Gastrointestinal and intracerebral hemorrhage has been reported in association with VELCADE. Transfusions may be considered. Tumor Lysis Syndrome: Tumor lysis syndrome has been reported with VELCADE therapy. Patients at risk of tumor lysis syndrome are those with high tumor burden prior to treatment. Monitor patients closely and take appropriate precautions. Hepatic Toxicity: Cases of acute liver failure have been reported in patients receiving multiple concomitant medications and with serious underlying medical conditions. Other reported hepatic reactions include hepatitis, increases in liver enzymes, and hyperbilirubinemia. Interrupt VELCADE therapy to assess reversibility. There is limited re-challenge information in these patients.

Embryo-fetal: Pregnancy Category D. Women of reproductive potential should avoid becoming pregnant while being treated with VELCADE. Bortezomib administered to rabbits during organogenesis at a dose approximately 0.5 times the clinical dose of 1.3 mg/m2 based on body surface area caused post-implantation loss and a decreased number of live fetuses. ADVERSE EVENT DATA: Safety data from phase 2 and 3 studies of single-agent VELCADE 1.3 mg/m2/dose administered intravenously twice weekly for 2 weeks followed by a 10-day rest period in 1163 patients with previously-treated multiple myeloma (N=1008) and previously-treated mantle cell lymphoma (N=155) were integrated and tabulated. In these studies, the safety profile of VELCADE was similar in patients with multiple myeloma and mantle cell lymphoma. In the integrated analysis, the most commonly reported (≥10%) adverse reactions were nausea (49%), diarrhea NOS (46%), fatigue (41%), peripheral neuropathies NEC (38%), thrombocytopenia (32%), vomiting NOS (28%), constipation (25%), pyrexia (21%), anorexia (20%), anemia NOS (18%), headache NOS (15%), neutropenia (15%), rash NOS (13%), paresthesia (13%), dizziness (excl vertigo 11%), and weakness (11%). Eleven percent (11%) of patients experienced at least 1 episode of ≥Grade 4 toxicity, most commonly thrombocytopenia (4%) and neutropenia (2%). A total of 26% of patients experienced a serious adverse reaction during the studies. The most commonly reported serious adverse reactions included diarrhea, vomiting, and pyrexia (3% each), nausea, dehydration, and thrombocytopenia (2% each), and pneumonia, dyspnea, peripheral neuropathies NEC, and herpes zoster (1% each). In the phase 3 VELCADE+melphalan and prednisone study in previously untreated multiple myeloma, the safety profile of VELCADE administered intravenously in combination with melphalan/prednisone is consistent with the known safety profiles of both VELCADE and melphalan/prednisone. The most commonly reported adverse reactions in this study (VELCADE+melphalan/prednisone vs melphalan/prednisone) were thrombocytopenia (48% vs 42%), neutropenia (47% vs 42%), peripheral neuropathy (46% vs 1%), nausea (39% vs 21%), diarrhea (35% vs 6%), neuralgia (34% vs <1%), anemia (32% vs 46%), leukopenia (32% vs 28%), vomiting (26% vs 12%), fatigue (25% vs 14%), lymphopenia (23% vs 15%), constipation (23% vs 4%), anorexia (19% vs 6%), asthenia (16% vs 7%), pyrexia (16% vs 6%), paresthesia (12% vs 1%), herpes zoster (11% vs 3%), rash (11% vs 2%), abdominal pain upper (10% vs 6%), and insomnia (10% vs 6%). In the phase 3 VELCADE subcutaneous vs intravenous study in relapsed multiple myeloma, safety data were similar between the two treatment groups. The most commonly reported adverse reactions in this study were peripheral neuropathy NEC (37% vs 50%), thrombocytopenia (30% vs 34%), neutropenia (23% vs 27%), neuralgia (23% vs 23%), anemia (19% vs 23%), diarrhea (19% vs 28%), leukopenia (18% vs 20%), nausea (16% vs 14%), pyrexia (12% vs 8%), vomiting (9% vs 11%), asthenia (7% vs 16%), and fatigue (7% vs 15%). The incidence of serious adverse reactions was similar for the subcutaneous treatment group (20%) and the intravenous treatment group (19%). The most commonly reported SARs were pneumonia and pyrexia (2% each) in the subcutaneous treatment group and pneumonia, diarrhea, and peripheral sensory neuropathy (3% each) in the intravenous treatment group. DRUG INTERACTIONS: Bortezomib is a substrate of cytochrome P450 enzyme 3A4, 2C19 and 1A2. Co-administration of ketoconazole, a strong CYP3A4 inhibitor, increased the exposure of bortezomib by 35% in 12 patients. Monitor patients for signs of bortezomib toxicity and consider a bortezomib dose reduction if bortezomib must be given in combination with strong CYP3A4 inhibitors (eg, ketoconazole, ritonavir). Co-administration of omeprazole, a strong inhibitor of CYP2C19, had no effect on the exposure of bortezomib in 17 patients. Co-administration of rifampin, a strong CYP3A4 inducer, is expected to decrease the exposure of bortezomib by at least 45%. Because the drug interaction study (n=6) was not designed to exert the maximum effect of rifampin on bortezomib PK, decreases greater than 45% may occur. Efficacy may be reduced when VELCADE is used in combination with strong CYP3A4 inducers; therefore, concomitant use of strong CYP3A4 inducers is not recommended in patients receiving VELCADE. St. John’s wort (Hypericum perforatum) may decrease bortezomib exposure unpredictably and should be avoided. Co-administration of dexamethasone, a weak CYP3A4 inducer, had no effect on the exposure of bortezomib in 7 patients. Co-administration of melphalan-prednisone increased the exposure of bortezomib by 17% in 21 patients. However, this increase is unlikely to be clinically relevant. USE IN SPECIFIC POPULATIONS: Nursing Mothers: It is not known whether bortezomib is excreted in human milk. Because many drugs are excreted in human milk and because of the potential for serious adverse reactions in nursing infants from VELCADE, a decision should be made whether to discontinue nursing or to discontinue the drug, taking into account the importance of the drug to the mother. Pediatric Use: The safety and effectiveness of VELCADE in children has not been established. Geriatric Use: No overall differences in safety or effectiveness were observed between patients ≥age 65 and younger patients receiving VELCADE; but greater sensitivity of some older individuals cannot be ruled out. Patients with Renal Impairment: The pharmacokinetics of VELCADE are not influenced by the degree of renal impairment. Therefore, dosing adjustments of VELCADE are not necessary for patients with renal insufficiency. Since dialysis may reduce VELCADE concentrations, VELCADE should be administered after the dialysis procedure. For information concerning dosing of melphalan in patients with renal impairment, see manufacturer’s prescribing information. Patients with Hepatic Impairment: The exposure of bortezomib is increased in patients with moderate and severe hepatic impairment. Starting dose should be reduced in those patients. Patients with Diabetes: During clinical trials, hypoglycemia and hyperglycemia were reported in diabetic patients receiving oral hypoglycemics. Patients on oral antidiabetic agents receiving VELCADE treatment may require close monitoring of their blood glucose levels and adjustment of the dose of their antidiabetic medication. Please see full Prescribing Information for VELCADE at VELCADEHCP.com.

VELCADE, MILLENNIUM and are registered trademarks of Millennium Pharmaceuticals, Inc. Other trademarks are property of their respective owners. Millennium Pharmaceuticals, Inc., Cambridge, MA 02139 Copyright © 2012, Millennium Pharmaceuticals, Inc. All rights reserved. Printed in USA

V-12-0273

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LETTERS FROM LILLIE

Editor-in-Chief Lillie D. Shockney, RN, BS, MAS University Distinguished Service Assoc Prof of Breast Cancer, Depts of Surgery & Oncology; Admin Director: Johns Hopkins Breast Clinical Programs; Johns Hopkins Cancer Survivorship Programs; Assoc Prof, JHU School of Medicine, Depts of Surgery & Gynecology and Obstetrics; Assoc Prof, JHU School of Nursing shockli@jhmi.ed

THE EXPANSION OF AONN: Network Globally, Navigate Locally

Section Editors

Lillie D. Shockney, RN, BS, MAS

Breast Cancer Sharon Gentry, RN, MSN, AOCN, CBCN

Dear Reader,

Breast Health Navigator Forsyth Regional Cancer Center

“

ello and welcome Spring 2013! This issue Although our cultures of JONS is particularly unique. You will have the opportunity to learn about a are unique, we have successful navigation model for patients with lung nodules which, frankly, can save a patient’s much in common. life through early detection. There is also a feature article that focuses our attention on a special patient population that we don’t like to necessarily think about; however, it certainly does exist – the survivorship care needs of adolescents and young adults. I personally have submitted an article to this issue that addresses the need for global breast cancer navigation programs with a special focus on low- and middle-income countries. I hope that this international focus on cancer and the valuable role navigation can play in promoting earlier detection and appropriate treatment will encourage patient navigators from around the world to join AONN. We certainly know that cancer is not a disease limited to the United States. I had the privilege last month of traveling to Canada to meet with a group of oncology nurse navigators to exchange ideas, learn from one another, and foster a continued relationship so that we can more formally begin networking with others globally. Although our healthcare payment systems may be different, socioeconomic challenges diverse, and cultures unique, we have much in common: the importance of community outreach, patient advocacy, barrier assessment and resolution, psychosocial support, efficiency in delivering cancer care, and adherence to cancer treatment. A new website design for AONN has been created and launched that I am very confident you will find incredibly valuable. There will be additional features to the site coming in the near future too. Our Leadership Council and AONN support staff are working hard to bring you more services and benefits too, which I personally am quite excited about! Enjoy the spring as we warm up from winter and become re-energized to conduct our local community outreach events. I hope you will find inspiration in the additional resources that soon will be coming your way! g

”

Cancer Rehabilitation & Survivorship Julie Silver, MD Assistant Professor Harvard Medical School

Prostate Cancer Frank delaRama, RN, MS, AOCNS Clinical Nurse Specialist Oncology/Genomics, Cancer Care Clinic Palo Alto Medical Foundation

Healthcare Disparities Linda Fleisher, PhD, MPH Asst VP, Office of Health Communications and Health Disparities Asst Prof, Cancer Prevention and Control Fox Chase Cancer Center

Health Promotion and Outreach Iyaad Majed Hasan, MSN, FNP Director and Nurse Practitioner Survivorship Clinic and Program Cleveland Clinic, Taussig Cancer Center

Thoracic Oncology Pamela Matten, RN, BSN, OCN St. Joseph Hospital, Orange, CA

AONN Research Committee Marcy Poletti, RN, MSN Program Administrator, Oncology Services Wake Forest University, Baptist Medical Center

Elaine Sein, RN, BSN, OCN, CBCN Senior Project Manager Fox Chase Cancer Center Partners Program

Penny Widmaier, RN, MSN Nurse Navigator Botsford Cancer Center

With kind regards,

MISSION STATEMENT

Lillie D. Shockney, RN, BS, MAS Editor-in-Chief

JONS-online.com

The Journal of Oncology Navigation & Survivorship (JONS) promotes reliance on evidence-based practices in navigating patients with cancer and their caregivers through diagnosis, treatment, and survivorship. JONS also seeks to strengthen the role of nurse and patient navigators in cancer care by serving as a platform for these professionals to disseminate original research findings, exchange best practices, and find support for their growing community.

JOURNAL OF ONCOLOGY NAVIGATION & SURVIVORSHIP

PUBLISHING STAFF SENIOR VICE PRESIDENT, SALES & MARKETING

Philip Pawelko phil@greenhillhc.com PUBLISHER

John W. Hennessy john@greenhillhc.com DIRECTOR, CLIENT SERVICES

Eric Iannaccone eric@greenhillhc.com EDITORIAL DIRECTOR

Kristin Siyahian kristin@greenhillhc.com EDITORIAL ASSISTANT

Jennifer Brandt SENIOR COPY EDITOR

Rosemary Hansen

TABLE OF CONTENTS

FEBRUARY 2013 • VOL 4, NO 1

CLINICAL PRACTICE

PRODUCTION MANAGER

Assuring Lung Nodule Surveillance: A Navigation Model By Gean Brown, RN, OCN

Stephanie Laudien QUALITY CONTROL DIRECTOR

Barbara Marino BUSINESS MANAGER

Blanche Marchitto CIRCULATION DEPARTMENT

circulation@greenhillhc.com

Journal of Oncology Navigation & Survivorship, ISSN 21660999 (print); ISSN 2166-0980 (online), is published 6 times a year by Green Hill Healthcare Communications, LLC, 1249 South River Road, Suite 202A, Cranbury, NJ 08512. Telephone: 732.656.7935. Fax: 732.656.7938. Copyright ©2013 by Green Hill Healthcare Communications, LLC. All rights reserved. Journal of Oncology Navigation & Survivorship logo is a registered trademark of Green Hill Healthcare Communications, LLC. No part of this publication may be reproduced or transmitted in any form or by any means now or hereafter known, electronic or mechanical, including photocopy, recording, or any informational storage and retrieval system, without written permission from the publisher. Printed in the United States of America. EDITORIAL CORRESPONDENCE should be addressed to EDITORIAL DEPARTMENT, Journal of Oncology Navigation & Survivorship (JONS), 1249 South River Road, Suite 202A, Cranbury, NJ 08512. E-mail: jbrandt@thelynx-group.com. YEARLY SUBSCRIPTION RATES: United States and possessions: individuals, $50.00; institutions, $90.00; single issues, $5.00. Orders will be billed at individual rate until proof of status is confirmed. Prices are subject to change without notice. Correspondence regarding permission to reprint all or part of any article published in this journal should be addressed to REPRINT PERMISSIONS DEPARTMENT, Green Hill Healthcare Communications, LLC, 1249 South River Road, Suite 202A, Cranbury, NJ 08512. The ideas and opinions expressed in JONS do not necessarily reflect those of the editorial board, the editorial director, or the publisher. Publication of an advertisement or other product mention in JONS should not be construed as an endorsement of the product or the manufacturer’s claims. Readers are encouraged to contact the manufacturer with questions about the features or limitations of the products mentioned. Neither the editorial board nor the publisher assumes any responsibility for any injury and/or damage to persons or property arising out of or related to any use of the material contained in this periodical. The reader is advised to check the appropriate medical literature and the product information currently provided by the manufacturer of each drug to be administered to verify the dosage, the method and duration of administration, or contraindications. It is the responsibility of the treating physician or other healthcare professional, relying on independent experience and knowledge of the patient, to determine drug dosages and the best treatment for the patient. Every effort has been made to check generic and trade names, and to verify dosages. The ultimate responsibility, however, lies with the prescribing physician. Please convey any errors to the editorial director.

FEBRUARY 2013 • VOLUME 4, ISSUE 1

SURVIVORSHIP

Improving Cancer Survivorship for Adolescents and Young Adults By Mandi Pratt-Chapman, MA; Anne Willis, MA; Jennifer Bretsch, MS; Steven R. Patierno, PhD

ADDRESSING DISPARITIES

Navigation Needs for Breast Health and Breast Cancer Populations in Low- and Middle-Income Countries By Lillie D. Shockney, RN, BS, MAS

ABOUT THE COVER Hope in the Storm Watercolor by a Family Member, Friend or Caregiver Idaho Artwork from the Lilly Oncology On Canvas: Expressions of a Cancer Journey Art Competition (www.LillyOncologyOnCanvas.com).

AONNonline.org

2ND ANNUAL

s JO erie View NS s o th -o nli e nli ne ne a .co t m

CONQUERING THE CANCER CARE CONTINUUM

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CONQUERING THE CANCER CARE CONTINUUM CONQUERING CANCER CARTHE C E CONT I

A 6-part series

The publishers of The Oncology Nurse-APN/PA, The Oncology Pharmacist, and Personalized Medicine in Oncology are proud to present our 2nd annual Conquering the Cancer Care Continuum series. Upcoming topics include:

Challenges Patients Face in Cancer Care: Implications for the Healthcare Team Lea Ann Hansen, PharmD, BCOP Associate Professor, Virginia Commonwealth University

cancer.1 More than half are living well beyond 5 years ancer is an illness associated with substantial physical, emotional, social, and financial ramafter diagnosis. Women comprise a majority of longifications for affected individuals and their term survivors due to the favorable outcomes with families. In a significant number of cases, the diagnosis breast, cervical, and uterine cancers.2 The number of of cancer is either preceded by a period people living with a history of cancer +!*%!+ of gradual, nonspecific symptoms or is projected to grow considerably over discovered by routine screening, and the next 20 years for 2 major reasons. individuals are then thrust into a First, the number of Americans over whirlwind of diagnostic testing, inage 65 is predicted to double between vasive procedures, and complicated the years 2000 and 2030.3 Consetreatments with very little warning or Lea Ann Han quently, as a disease primarily of older sen, Pha Associate opportunity to assimilate their circumProfessor, rmD, BCOP adults, cancer will also increase. SecVirginia Commond, stances. Frequently, a multidisciplinary as the effectiveness of cancer onweal versity ™ th Uni approach to treatment is necessary, retreatments improves, the number of he past dec ade has seen quiring patients to engage with numerthe utilizat a drapatients matic upscured of the disease will in).+-% &( ion of spe urgan e in ,"+&",several comprising ous medical teams crease, and even larger percentage cialty pha types of Medic rmacies for are Moder Lea Annthe Hansen, rapeutic all different specialties, often in different those for can be living longer with disease nization Ac will mo dalities, as “athe cer. The BCOP PharmD, t defined part D dru including cost of can a specialty locations. Many patients have been about $125 bill receiving multiple “lines” of g with plan-n cer carewhile ceed $40 drug ion in 201 may rise from egotiated 0 0 to $20 prices tha relatively healthy prior to the cancer lion therapy (first-line, eventbyand second-line, etc) over time. per Themonth.” 2 Oth thethere7 bilend of the fine spe t exer health cial dru dec ade. demand plans ma gs differe ofe,medical fore are not sophisticated consumerstim overall specialtyserBy that for oncology services is expected totyiny dently. In gen drugs are accon predic ounhealthcare eral, they hig vices. Consequently, it is incumbent crease byted 48% by 2020, while the supply of oncologists t for 2 of h cos to t, adminis are every 5 pha tered by inje lars spent. 4or 1 professionals to be able to facilitate patients’ transition increase only 14% based on current patterns. cy dolby infu sion The purpos willrma ctio , require spe n e of this arti to expand cial handlin ersity intoBCO carePin order to minimize theirisdistress the need for a wide varietyor are used lain maxicle underscore the evoluti These statistics g, en, PharmD, Commonwealth Univ for comple 80%, cialty pha on nia their clinical outcomes. Lea Ann Hans ssor, Virgimize from 17% toand other support personnel torequire x diseases of range the of ens health professionals spe rmacycatio Profe regim that special mo ption andnthe Associate on assumeach oral mediand can nitoring. functio term serv cology, how Anscomm Challenges exist beyond diagnosis play a part and every patient to re.2-4 t initial e in the around 50% In onmenthe itin enabling ever, the getreatment systemic treat ts would be an avera andwith most com r agen of can to the scenario forperiod agents disp ance nttreatment as well. According to National quality care that addresses ceive all of their needs disc aantic mina cer uss nistr mo oral predo thee pot to ent ensed by n he been renc involved admi adheindividandthat a specialty disease, has of the illness. Patients deialityben macy pro the traditionally ofefit (NCI), more throughout million llen pharges oftothe highlythan 12cha s the continuum sever vider (SP of cancer has Cancer Institute thesyst ate the otherapy by due P) are the poi high er, ies indic em targeted from of view e. Stud venous chem United States fine quality of care based on are their ability to5: are a history untru nt.livingntwith the newer of theofpatproven agents tha the patie tion of intra uals in the py ient. t are adm ly monitored for cancer thera tered ora inisnnel who close lly. After adherence rates5 an trained perso The Evo a system adherence has vie . Non took place in w of the lite 97% atic dures lut to Green Hill Healthcare Communications, LLC ion proce re15% of Spec rature, one e outcomes When these infuDrugs an group of ialt academic y iated with wors or in a hospital d assoc authors pro s and with oncologist’s office of the Pharmac Specialtbeen y posed the critical des disease state Lea Ann sive education most y in a number of Hansen criptors er hossion center, exten , high More of a spe There is drug to be 3 ician visitsPha rmD, BCO , ly was possible. cialty a lack of : increased phys stays, P consen patient and fami specialty ly comsus on the • High cos , longer hospital drug. The n rates an increasing ver, zatio defi t pitali howe (pre mornition of ased Food and scriptions recently, not defined one or a Druse than $600 cost more ening, and incre g Ad lves the use of wors the invo min • Dif to tion term disea istr per ficult me ation has . Initially, month) mon situa one-third synonymo dmindication the6 Appl roximately us with bio cations and self-a delivery, tality. labe was virtuallcation-related— Special technology the such as more oral medi teins pro handling y Leain of all medi producs ts, duced by eous therapies Ann requiring n eitherdue recombin two-third istered subcutan strict tem pro-to medicatio control respon-Hansen,mo nocrmD Asstoci ant DNA ations are lonal, ant perature ate Profes Pha ent. 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CLINICAL PRACTICE

Assuring Lung Nodule Surveillance: A Navigation Model Gean Brown, RN, OCN Oncology Nurse Navigator, Middlesex Hospital Cancer Center, Middletown, Connecticut

he American Cancer Society reports that lung cancer is the leading cause of cancer death for both men and women and that more people die each year from lung cancer than from cancer of the colon, breast, and prostate combined.1 With all cancers, early detection is the key to preventing death. In a recent study, known as the National Lung Screening Trial (NLST), it was shown that high-risk individuals, ie, those with a strong smoking history, who received a low-dose spiral computed tomography (CT) screening had a 20% lower mortality from lung cancer than those who were followed with chest x-rays.2 The acceptance of CT lung screening as a standard of care for high-risk individuals is forthcoming. Physician and patient demand warrants that CT screening programs be accessible to those individuals who fit the high-risk criteria. Until CT screens are accepted as standard of care and covered by major insurance carriers such as Medicare, programs need to be in place to follow up on incidental lung nodules. The nurse navigator is the ideal person to coordinate surveillance, and with many self-pay screening programs being offered today, the navigation model has been used successfully.

The improvement in diagnostic imaging in the past decade has led to an increase in the number of lung nodules found incidentally. The Fleischner Society is an international multidisciplinary medical society for thoracic radiology, dedicated to the diagnosis and treatment of diseases of the chest.3 This society developed guidelines for recommended follow-up for incidentally found lung nodules (Table).4 With the guidelines in place, the next steps are to ensure that when a lung nodule is found, the abnormality is communicated to the primary care provider, and that the guidelines are then implemented. As described by C-Change, a nonprofit cancer collaborative, patient navigation is a program available for patients, their families, and caregivers to assist in overcoming healthcare system barriers and to facilitate timely access to quality medical and psychosocial care from prediagnosis through all phases of cancer care.5 Middlesex Hospital Cancer Center requires the oncology nurse navigators to be oncology certified nurses6; in addition, the thoracic nurse navigators are chemotherapy and biother-

FEBRUARY 2013 â&#x20AC;˘ VOLUME 4, ISSUE 1

apy certified by the Oncology Nursing Society.7 Helping patients through the transition from suspicious finding, to diagnosis, to treatment, and beyond is the goal of the nurse navigator.

BACKGROUND The improvement in diagnostic imaging in the past decade has led to an increase in the number of lung nodules found incidentally. A large number are found by emergency department (ED) providers using chest x-rays and chest/abdomen/pelvis CT scans. Patients are often discharged and told to follow up with their primary care provider (PCP). The PCP should be notified of the finding, but many times this is not the case. Communication often breaks down, and these findings are not communicated to the PCP, which may lead to lung cancer being missed at an early stage when cure is possible. Communicating the finding to the PCP is an integral part of ensuring follow-up, but sending copies of reports and instructing patients to follow up with their PCP does not guarantee the appropriate follow-up. Additionally, PCPs do not consistently follow guidelines adapted by radiology for lung nodule follow-up. A system is needed to ensure timely follow-up, and a quality assurance program (QAP) led by a thoracic nurse navigator is 1 solution. METHODS In addition to navigating lung cancer patients through the complex cancer system, the thoracic nurse navigator at Middlesex Hospital Cancer Center assists with lung nodule surveillance. The nurse navigator meets with radiology and develops a plan to have access to the folder in the picture archiving and communication system (PACS), which is the radiology computer system used to store and view imaging studies. The thoracic nurse navigator reviews the folder on a regular basis and contacts the PCP to ensure follow-up. The nurse navigator faxes a form letter to the PCP with the basic information and a copy of the report. Services of the thoracic nurse navigator are offered to assist in obtaining further diagnosis or further surveillance. The nurse navigator also offers pulmonary, thoracic surgery, medical oncology, or radiation oncology consults as appropriate for further diagnosis or treatment. If the PCP doesnâ&#x20AC;&#x2122;t respond in a timely manner, a follow-up phone call is made to the PCP. For patients without a PCP, a list is provided. A follow-up phone call is made to the patient to ensure that a PCP has been selected. The

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“Quality care is everyone’s business.” Beth Faiman, RN, MSN, APRN, BC, AOCN Nurse Practitioner, Multiple Myeloma Program Cleveland Clinic Taussig Cancer Institute Cleveland, OH

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Table Recommendations for Follow-up and Management of Nodules Smaller Than 8 mm Detected Incidentally at Nonscreening CT Nodule Size (mm)* ≤4 >4-6

Low-Risk Patient† No follow-up needed§

High-Risk Patient‡ Follow-up CT at 12 mo; if unchanged, no further follow-up‖

Follow-up CT at 12 mo; if unchanged, no further follow-up‖ Initial follow-up CT at 6-12 mo then at 18-24 mo if no change

Initial follow-up CT at 6-12 mo then at 18-24 mo if no change‖

Initial follow-up CT at 3-6 mo then at 9-12 and 24 mo if no change Follow-up CT at around 3, 9, and 24 mo, dynamic Same as for low-risk patient contrast-enhanced CT, PET, and/or biopsy

>6-8 >8

Note—Newly detected indeterminate nodule in persons 35 years of age or older. *Average of length and width. † Minimal or absent history of smoking and of other known risk factors. ‡ History of smoking or of other known risk factors. § The risk of malignancy in this category (<1%) is substantially less than that in a baseline CT scan of an asymptomatic smoker. ‖ Nonsolid (ground-glass) or partly solid nodules may require longer follow-up to exclude indolent adenocarcinoma. Abbreviations: CT, computed tomography; PET, positron emission tomography. Reprinted with permission from: MacMahon H, Austin JHM, Gamsu G, et al. Guidelines for Management of Small Pulmonary Nodules Detected on CT Scans: A Statement from the Fleischner Society. Radiology. 2005;237:398. Copyright 2005 by RSNA.

Figure 1 Quality Assurance Model: Ensuring Follow-up of Incidentally Found Pulmonary Nodules

Medical Oncologist Radiation Oncologist

Emergency Department Provider

Lung Nurse Navigator

Primary Care Provider

Radiologist

Pulmonologist

Thoracic Surgeon

nurse navigator then contacts the PCP to communicate the abnormal finding and the recommendations. Buy-in from the PCPs was essential for the program to be successful. This was established through a visit to the PCP by the nurse navigator and a pulmonologist. Details and benefits of the program were provided. The majority of the PCPs stated that they thought the program was a valuable service and applauded Middlesex Hospital for providing the service. When lung nodules do not require immediate diagnostics, the surveillance program is implemented. The nurse navigator uses a medical information data analysis system, or MIDAS, which is a computerized care management program. Patients are entered in the system to be followed per the Fleischner guidelines.3 When repeat CT scans are

FEBRUARY 2013 • VOLUME 4, ISSUE 1

warranted, the nurse navigator calls the PCP to ensure that imaging is ordered. The nurse navigator follows up on the results and continues surveillance or diagnostic workup if required. Emergency department providers are another source of referrals to the program. An electronic referral system was implemented so the ED providers could send a referral to the thoracic nurse navigator. Follow-up is initiated by the nurse navigator in the same manner as with the QAP (Figure 1). A self-pay low-dose screening program was recently implemented with the nurse navigator at the hub. The cost of the CT screening is $125.00, which is paid in advance when the patient is scheduling the appointment. Patients must have a PCP and may not self-refer. The PCP sends the order to radiology, and when the scan is completed the results go to the nurse navigator and to the PCP. The nurse navigator follows up with a letter to the patient after the PCP has communicated the results to the patient. The nurse navigator letter outlines needed follow-up, offers smoking cessation information (if warranted), and offers the patient information on the Lung Cancer Alliance Give a Scan program.8 The Give a Scan program was set up to increase lung cancer research and is offered at no cost to the patient.8

DISCUSSION The QAP, managed by the thoracic nurse navigator, provides a seamless referral system to the Lung Pathway. The Lung Pathway has 3 components: diagnosis, supportive care following diagnosis, and surveillance. Since its

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CLINICAL PRACTICE

inception in July 2010, close to 900 patients with abnormal lung findings have been entered into the PACS; however, not all of the imaging reports were appropriate for the program. Occasionally, findings such as pancreatic or colon masses have been placed in the lung cancer folder by the radiologists. Although these findings require follow-up as well, they are removed from the folder, and an e-mail is sent to the radiologist explaining that the thoracic nurse navigator is not the appropriate person to follow up on that particular finding. Most radiologists comply with the program, and this pathway has led to approximately 50 lung cancer diagnoses in 1 year. This is 5% of all the cases referred to the QAP yearly. Transitioning patients through to treatment in a timely manner is an important part of the program as well. The average time from scan to diagnosis is 21 days. Those patients who are being evaluated for cancer will have the thoracic nurse navigator involved to coordinate services and appointments as needed and to remove any barriers to care, as well as to offer support and education. In addition to the timely diagnosis of lung cancer, suspicious lung nodules are being followed more consistently. Radiologists have adopted the Fleischner guidelines and have integrated them as part of all reports on abnormal nodules.4 Additionally, the nurse navigator works closely with pulmonary and thoracic surgery to get advice and recommendations on the acuity of the finding and appro-

Figure 2 Increase in Number of Patients Referred to Lung Surveillance Pathway 50 45

7/1/09-7/1/10

7/1/10-7/1/11

35 30 25 20 15 10 5 0 Jul

Sep

Nov

Jan

Mar

May

priate follow-up. In some instances, the PCP will call to ask for further guidance, and the thoracic surgeon or pulmonologist is able to guide the diagnostic workup.

CONCLUSIONS The goal of the QAP at the Middlesex Hospital Cancer Center is to ensure the appropriate follow-up for incidentally found lung nodules. We found that fewer patients were lost to follow-up and there was an increase in the diagnosis of lung cancer at an early stage. Many of the

CASE STUDY

F is a 66-year-old female with a smoking history of greater than 50-pack years. She quit smoking 8 years ago. WF presented to the emergency department with a complaint of shortness of breath and left-sided chest pain, which has worsened over 2 days. She has no previous heart or lung disease but has a history of high blood pressure. A CT angio pulmonary embolus study was performed, and it revealed bilateral lower lobe pulmonary thromboemboli, a small left pleural effusion, and left lower lobe atelectasis. In addition, the radiologist noted biapical and pleuroparenchymal densities. The radiologist recommended follow-up with a 3- to 6-month CT scan. The abnormal scan was put in the nurse navigator QAP folder. The nurse navigator contacted the PCP and put the patient on the Lung Surveillance Pathway. Three months later, the PCP was reminded by the nurse navigator to order a follow-up CT scan of the chest; this was done and was read by radiology as having

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essentially stable lung findings. A repeat examination in 4 to 6 months was recommended. Again the exam was stable, and it was stable for a subsequent imaging study as well; but on the following CT scan, which was 18 months after the first abnormal CT results, the radiologist read the study as a possible slight increase in 1 of 2 right upper lung opacities. He further stated that given the location of the finding, a percutaneous biopsy would prove to be extremely difficult and therefore to consider either a PET scan and/or follow-up CT chest scan in 6 months. The nurse navigator discussed this report with the lung physician champion, a pulmonologist who decided the patient should be seen by the thoracic surgeon. The PCP agreed to the plan, and WF was seen by the thoracic surgeon, who recommended a thoracoscopic wedge resection of the lesion with frozen section. Results were positive for adenocarcinoma of the lung, and a right upper lobectomy was performed. Her surgical stage was IB (stage pT2a pN0 Mx).

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CLINICAL PRACTICE

patients with an abnormal lung finding are on surveillance and are followed according to the guidelines set by the Fleischner Society.4 The surveillance portion of the Lung Pathway has increased markedly since the inception of the QAP (Figure 2). The QAP gives PCPs guidance and assistance in following patients for 2 years, or longer if warranted. MacMahon and colleagues noted that nodules with ground glass opacity features tend to grow slowly, with a mean volume doubling time on the order of 2 years, whereas solid cancers grow rapidly, with a mean volume doubling time of 6 months.4 Because of the many difficult aspects of lung nodule surveillance, the nurse navigator will usually offer a pul-

Influencing the Patient-Impact Factor

THIRD ANNUAL CONFERENCE May 2-5, 2013 Westin Diplomat Hollywood, Florida REGISTER TODAY AT www.AVBCConline.org

FEBRUARY 2013 â&#x20AC;˘ VOLUME 4, ISSUE 1

monary consult to the PCP to ensure appropriate follow-up. One barrier faced by the nurse navigator starting the QAP was the PCPsâ&#x20AC;&#x2122; reluctance to expose patients to radiation from CT scans. The Middlesex radiologists are currently using low-dose CT scans whenever possible in lung nodule follow-up. The radiation in a low-dose CT scan is 25% less than a full CT scan of the chest. Another issue is reminding the radiologists to consistently put the abnormal reports into the designated folder. The most disturbing issue with lung nodule surveillance is patient anxiety, but finding an early cancer, when it may be curable, greatly outweighs the anxiety. The thoracic nurse navigator is available to support patients who may be anxious about their findings. The nurse navigator does not contact patients on the surveillance portion of the program unless specifically requested by the PCP. Appropriate follow-up of suspicious lung nodules is an important step in lung cancer surveillance. The future adoption of Medicare coverage for CT lung cancer screening of high-risk individuals may aid in improving outcomes through early diagnosis of lung cancer when it is treatable and curable. g Acknowledgments: The author gratefully acknowledges Molly A. Brewer, DVM, MD, MS, for her help, support, and mentoring. The author also wishes to thank Sarah Jeffrey, BA, for her continued guidance. Disclosures: Gean Brown, RN, OCN, is on the speakers bureau of Pfizer Inc. Corresponding author: Gean Brown, RN, OCN, Oncology Nurse Navigator, Middlesex Hospital Cancer Center, 536 Saybrook Road, Middletown, CT 06457; e-mail: gean.brown@midhosp.org.

REFERENCES

1. Cancer Facts and Figures 2012. American Cancer Society Web site. http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/ documents/document/acspc-031941.pdf. Accessed February 25, 2012. 2. The National Lung Screening Trial Research Team. Reduced lung-cancer mortality with low-dose computed tomographic screening. N Engl J Med. 2011;365(5):395-409. 3. Fleischner Society for thoracic imaging and diagnosis. Fleischner Society Web site. http://fleischner.org/. Accessed January 21, 2013. 4. MacMahon H, Austin JHM, Gamsu G, et al. Guidelines for management of small pulmonary nodules detected on CT scans: a statement from the Fleischner Society. Radiology. 2005;237(2):395-400. 5. C-Change. Cancer Patient Navigation Overview. http://www.cancer patientnavigation.org/index.html. Accessed March 6, 2013. 6. About ONCC. Oncology Nursing Certification Corporation Web site. http://www.oncc.org/about. Accessed November 2, 2012. 7. 2-Day chemotherapy & biotherapy course. Oncology Nursing Society Web site. http://www.ons.org/CNECentral/Chemo/Main. Accessed November 2, 2012. 8. Give a scan. Lung Cancer Alliance Web site. http://www.lungcanceral liance.org/get-involved/help-increase-lung-cancer-research/give-a-scan/. Accessed November 2, 2012.

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Fourth Annual Navigation and Survivorship Conference Memphis, Tennessee â&#x20AC;˘ The Peabody Memphis

NOVEMBER 15-17, 2013 CONFERENCE CO-CHAIRS Lillie D. Shockney, RN, BS, MAS AONN Program Director University Distinguished Service Associate Professor of Breast Cancer Departments of Surgery and Oncology Administrative Director, Johns Hopkins Clinical Breast Programs Administrative Director, Johns Hopkins Cancer Survivorship Programs Department of Surgery and Oncology Associate Professor, JHU School of Medicine Departments of Surgery, Oncology, and Gynecology Associate Professor, JHU School of Nursing Johns Hopkins Avon Foundation Breast Center Baltimore, MD

Sharon Gentry, RN, MSN, AOCN, CBCN Breast Health Navigator Derrick L. Davis Forsyth Regional Cancer Center Winston-Salem, NC

www.AONNonline.org AONNAsize31413

SURVIVORSHIP

Improving Cancer Survivorship for Adolescents and Young Adults

Mandi Pratt-Chapman, MA

Mandi Pratt-Chapman, MA, Associate Director of Community Programs Anne Willis, MA, Director of the Division of Cancer Survivorship Jennifer Bretsch, MS, Project Manager of the Division of Cancer Survivorship M Pratt-Chapman, A Willis, and J Bretsch are from The George Washington University Cancer Institute, Washington, DC Steven R. Patierno, PhD, Deputy Director, Duke Cancer Institute

Abstract: Adolescent and young adult (AYA) cancer survivors face challenges of transitioning to adulthood as well as long-term and late effects of cancer and its treatment. These unique AYA survivorship needs necessitate interventions and approaches that are tailored to the population. To identify successful and promising interventions to address AYA posttreatment needs, the George Washington Cancer Institute held a symposium that brought together cancer survivors and caregivers, researchers, clinicians, and other healthcare professionals to identify key issues for these survivors, explore current approaches for addressing these concerns, and recommend interventions that may improve survivorship care and quality of life for AYAs. Participants explored 5 key areas of need related to healthcare delivery system challenges, psychosocial impacts, health maintenance needs, employment issues, and community-level barriers. Based on perspectives from diverse stakeholders, this paper provides an overview of key issues for AYAs and identifies some strategies and interventions for improving care and support.

dolescents and young adults (AYAs) with a past diagnosis of cancer, whether diagnosed in childhood or in young adulthood, face consequences from the disease and its treatment. Some of these effects, such as infertility, are different for adult survivors of pediatric cancer (ASPC) and young adult cancer survivors (YACS), who are between the ages of 15 and 39 years, than for older adults, while other impacts are exacerbated by their life stage. Because of these distinctions from older adults, these populations must be considered separately from older survivors to best address posttreatment challenges. Although ASPC and YACS are distinct with different impacts, this paper focuses on the commonalities of survivors who are AYAs. People who are between 15 and 39 years of age are at a significant transition period in their lives with psychological, developmental, and social changes occurring.1 Despite variance in emotional age and maturity, AYAs tend to have limited experience with illness; are expected to meet many social milestones, such as graduating from school or starting a career; and are in their reproductive years. This time period can be especially difficult for AYAs who are also burdened by the impacts of cancer survivorship. To contribute to knowledge about the ongoing challenges facing ASPC and YACS, the George Washington Cancer Institute (GWCI) held its second Cancer Survivorship Research Symposium, entitled Research to Practice: Creating Novel Interventions to Eliminate Health Inequalities. This paper summarizes the discussion of some key posttreatment issues, current approaches to

FEBRUARY 2013 â&#x20AC;˘ VOLUME 4, ISSUE 1

address those issues, and recommendations and interventions that may be useful.

DEFINING THE POPULATIONS The National Cancer Institute (NCI) classifies ASPC as having been diagnosed with cancer before the age of 15 years.2 For all pediatric cancers combined, the survival rate is 83%, a significant improvement from 58% in the mid-1970s, although the survival rate for some cancers is not as high.3 With this increasing population, the Childhood Cancer Survivor Study (CCSS) was launched to better understand long-term impacts for this group. Through numerous publications, the study has documented the risk for secondary cancers and other medical issues, reproductive complications, and psychosocial and health behavior issues.4 Pediatric cancer survivors are often followed at cancer centers by their oncology team until they reach adulthood. After this time, however, many ASPC no longer receive regular follow-up care.5 While there is debate about the age range for AYAs, the NCI defines this population as ages 15 to 39 years at time of diagnosis.1,6 Survival rates have improved for older and younger populations since the 1970s; yet, AYAs have experienced little improvement in survival rates during the same period. With low rates of clinical trials participation and the lack of infrastructure to collect data on AYAs, little is known about the long-term impacts on this population. Moreover, treatment exposures differ across diverse cancer types, so it is difficult to assess exposure-based out-

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SURVIVORSHIP

comes.7 Consequently, much of what is known about YACS has been extrapolated from adult and pediatric experiences.8 There is evidence, however, that suggests some of the central medical issues for YACS are second primary cancers, cardiotoxicity, infertility, and amputation.8 Psychosocial issues, such as psychiatric effects, educational and social functioning, and financial concerns, also impact YACS.8 Because they are particularly mobile,1 and fall in a “no-man’s land” where neither pediatric nor adult oncology might best meet their needs, YACS may be more likely to go without follow-up care.7

DEFINING THE CHALLENGES Despite the availability of long-term follow-up care guidelines, most ASPC do not regularly receive care focused on the long-term impacts of cancer and its treatment.5 Nathan et al found that fewer than 18% of survivors in a CCSS cohort had visited a healthcare provider to specifically address treatment impacts within the previous 2 years.5 Though some cancer centers have implemented long-term follow-up clinics that focus on delivering riskbased care, adult survivors who were treated as children or adolescents, who are at increased risk for lingering impacts, are often not followed in those clinics.9 Most ASPC, many of whom are unaware of their long-term risks,5 are cared for by community primary care providers who often have little training to deal with these survivors.10,11 Oeffinger and colleagues found that the percentages of survivors of a cohort of the CCSS who reported general medical contact ranged from 82% to 94%, while only 28% to 64% had a cancerrelated visit, and 12% to 40% had a cancer center medical visit.10 YACS face an even more fractured care system because they may be treated by a variety of physicians in different settings, including pediatricians, gynecologists, dermatologists, and other specialists.1 Barriers specific to this group include a lower level of concern for treatmentrelated problems, mobility, and insurance and employment issues.1 The National Comprehensive Cancer Network recently announced new AYA guidelines that provide guidance for YACS, but it will take some time for these guidelines to be integrated into practice. AYAs are particularly vulnerable because cancer intersects with the developmental transition to adulthood that involves a time of constant change.8,12 Few studies explore psychosocial impacts on YACS, but there is a growing body of research on the impacts for ASPC.12 Studies suggest that many ASPC are psychologically healthy, but for some subsets there are psychosocial issues, including depression, uncertainty, reduced health-related quality of life, and posttraumatic stress.13-19 YACS may also experience concerns with relationships, sexuality, and body image.20-23 Some of the medical and psychosocial impacts of cancer

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can be exacerbated by risky health behaviors.24 Modifying health behaviors is important for cancer survivors because it may reduce some of the late and long-term effects. Tobacco use is a particularly risky behavior. Other especially risky behaviors are physical inactivity, excess consumption of alcohol, poor nutrition, becoming obese or overweight, and nonadherence to sun protection.25-27 Being unemployed or struggling to maintain employment can impact the ability of ASPC and YACS to obtain follow-up care. Unemployed AYAs may not have access to employer-based health insurance, creating a barrier to accessing medical and psychosocial care. Although the Affordable Care Act extends the age children can stay on a parent’s insurance up to age 26 years, AYAs may be unable to remain on their parents’ health insurance plans for other reasons. When compared with healthy controls, ASPC have been found to be twice as likely to be unemployed.28 Certain diagnostic, treatment, and demographic variables correlate to unemployment, and health problems and disabilities may explain the higher rates for ASPC.29,30 For example, cranial radiation can lead to neurocognitive effects for CNS and brain tumor survivors that put them at significant risk. YACS, particularly those with cognitive impacts, may also struggle with employment.1

AYAs are particularly vulnerable because cancer intersects with the developmental transition to adulthood that involves a time of constant change. METHODS In May 2011, GWCI’s Center for the Advancement of Cancer Survivorship, Navigation and Policy (caSNP) held a symposium focused on raising awareness of survivorship concerns and improving research and clinical care for ASPC and YACS who are AYAs. One of the goals of the symposium was to leverage expertise of various stakeholders to collaboratively identify innovative interventions and solutions to physical, psychosocial, emotional, and economically derived health disparities within these populations. The agenda was developed by a committee representing national organizations (American Cancer Society, Children’s Cause for Cancer Advocacy, CureSearch, LIVESTRONG, National Coalition for Cancer Survivorship, The Ulman Cancer Fund for Young Adults), survivorship researchers, institutions that provide posttreatment care to ASCP (GWCI and Children’s National Medical Center) and 2 survivors (1 ASPC and 1 YACS).

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Participants were recruited through the GWCI caSNP listserv of healthcare professionals, a GW press release, the Oncology Nursing Society, American Academy of Child and Adolescent Psychiatry, the Association of Oncology Social Work, the committee members’ professional networks, and the Metropolitan Washington Public Health Association. Sixty-eight individuals attended the symposium, including cancer survivors and caregivers, researchers, clinicians (nurses, nurse practitioners, physicians, and social workers), and other healthcare professionals. Participants represented 11 cancer advocacy organizations, the American Society of Clinical Oncology, the National Cancer Institute, and 19 academic and community health services organizations. Eleven participants (16%) identified themselves as cancer survivors and 8 (12%) as caregivers, though many participants identified themselves as having multiple roles (ie, nurse and survivorship researcher or physician, caregiver, and survivorship researcher).

Five key topics were identified: delivery system challenges, psychosocial impacts, health maintenance needs, employment issues, and community-level barriers. A key part of the meeting was including the survivor perspective in each session to accentuate the patient experience. Five key topics were identified for meeting participants to explore in breakout sessions: healthcare delivery system challenges, psychosocial impacts, health maintenance needs, employment issues, and community-level barriers. These topics were selected based on advisory committee verbal consensus of the areas most in need of innovative interventions to improve survivor outcomes. In these breakout sessions, attendees were tasked with identifying problems, current approaches, and solutions or interventions to address the 5 challenge areas. Breakout group facilitators took notes during the sessions and reported results to all conference participants.

DISCUSSION AND RECOMMENDATIONS Healthcare Delivery System Challenges The Healthcare Delivery System Challenges session focused on proposing health system changes to facilitate transition of ASPC to age-appropriate care and facilitate access to optimal survivorship care for YACS. This session was facilitated by a nurse practitioner from Children’s National Medical Center and an ASPC working at the

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National Coalition for Cancer Survivorship. The main problems identified for ASPC and YACS were care fragmentation, the lack of definition around where long-term follow-up should take place and who should provide care, the lack of age-appropriate resources, the economic burden for these populations, and the mobility of the age group, which can cause difficulty accessing records and ensuring continuity of care. Participants discussed current strategies for addressing the long-term needs of these survivors. Riskbased care and programs that transition survivors from the pediatric to adult care setting are existing clinical interventions identified. A core component of these follow-up programs is the Survivorship Care Plan (SCP), a document that includes a treatment summary and a road map for follow-up care that can be shared with the survivor and other healthcare providers. Although the group noted that these clinical programs are not standard, some policy initiatives, such as the Comprehensive Cancer Care Improvement Act that would reimburse for time spent creating the SCP and the Commission on Cancer’s new accreditation standards that require the delivery of the SCP, may spur systemlevel changes to improve posttreatment care. Also, participants identified an increase in the number of ASPC- and YACS-specific conferences (eg, Stupid Cancer’s OMG! Cancer Summit for Young Adults) as well as age-appropriate resources and peer support opportunities (eg, First Descents, Planet Cancer, Tigerlily Foundation), which can help educate survivors about the need for follow-up care. Several possible solutions were recommended. Expanding the number of transitional survivorship programs can help to ensure that AYAs have access to appropriate posttreatment care. As these programs are established, participants noted that they should be catalogued in a central location for reference by providers and survivors, which may be helpful in increasing continuity of care for survivors who are mobile. To drive survivors to care, providers, including oncologists and primary care physicians, need to be educated about the needs of these survivors and trained on follow-up guidelines for ASPC and YACS. The group also discussed that survivors must also be educated so they understand the need for follow-up care and how they can minimize negative impacts. Importantly, the need for infrastructure for tracking outcomes was mentioned, especially for YACS.

Psychosocial Impacts Facilitated by a YACS who works at CureSearch, a researcher from the American Cancer Society, and an ASPC researcher from Wake Forest University, the Psychosocial Impacts session was designed to identify support interventions that would address posttreatment psychosocial challenges. Participants identified numerous

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psychosocial challenges, including depression/coping issues; parental stress (for survivors with children); survivor guilt related to added financial pressures; family dynamics; chemo brain; sibling resentment, guilt, and coping; school reintegration; developmental regression and parental difficulty letting a child go; negotiation of adult identity integrating the cancer experience; social isolation; new/old relationships and dating; body image; and sexuality, intimacy, and fertility. While limited, some resources identified by participants are available to address these unmet psychosocial needs. Psychosocial screening tools, such as the Impact of Cancer—Childhood Survivor (IOC-CS)31 or the Health Utilities Index,32 were identified as having measures that can be used in the AYA population. It was emphasized, however, that screening must be coupled with support. Session attendees pointed out that some institutions offer psychooncology programs that are linked with their survivorship services, and community organizations can play a critical role in providing age-appropriate support. This group also cited the increasing number of conferences for this population along with the emergence of organizations providing peer-to-peer support. Participants noted that organizations like Camp-Mak-A-Dream and First Descents offer AYA camps and retreats and that art therapy programs have been effective interventions. The group also recommended training physicians in psychosocial care and AYA development. They suggested that providers should create partnerships across disciplines so psychosocial assessment and care become part of a multidisciplinary approach. Some of the work could begin before treatment ends; providers can encourage the integration of social support networks into the treatment process (eg, allow friends to come to chemo, enable remote video to connect classrooms to hospital rooms) so survivors have continued support in the posttreatment phase. Attendees pointed out that these social support components should also be made available through activities that occur outside of the care setting. They also noted that community interventions that target psychosocial needs should be developed so they are accessible and easy to implement across geographic settings. Other recommendations made by the group include partnering with community organizations (eg, churches, health ministries, community health workers), engaging media to disseminate messages, providing education/outreach where these survivors are (eg, clubs), and creating a “stamp of approval” for AYA centers.

Health Maintenance Needs The Health Maintenance Needs session focused on identifying solutions to increase knowledge of and adherence to long-term follow-up guidelines to increase healthy behaviors. Facilitated by a survivorship researcher from

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Alpert Medical School of Brown University & Miriam Hospital and a YACS who works for the Children’s Brain Tumor Foundation, the group highlighted overweight and obesity, smoking and alcohol use, unprotected sun exposure, and unprotected sex as health behaviors that are problematic. The discussion of interventions to address risky behaviors included mention of the Partnership for Health’s peer-delivered smoking cessation program for ASPC33 and physical activity interventions, such as Survivors Step Into Motion and the Survivors RENEW study, both currently being tested in YACS. Also noted, the Survivor Health and Resilience Education Program was developed for ASPC to address different health behaviors, and it has been shown to be effective in improving sun safety and bone health.34-36 The use of social media campaigns was also mentioned to promote general health in the AYA population.

The Health Maintenance Needs session focused on increasing knowledge of and adherence to long-term follow-up guidelines to increase healthy behaviors. A multipronged approach was recommended that involves clinical practice, policy changes, technology, and patient tools. Healthy behaviors should be emphasized at all clinical visits. Attendees indicated that health promotion counseling and education can take place in the follow-up care setting and can be included in the SCP and its discussion. The SCP could help improve continuity of care across providers by ensuring health behaviors are discussed. The group pointed out that some interventions (eg, nutrition counseling) can begin in treatment and continue through survivorship. Policy changes, such as insurance coverage of exercise interventions, were also identified as likely being necessary. Participants discussed that providing multiple interventions in different formats can give survivors a choice, which may improve success, and utilizing new technologies like smartphones may be an effective strategy. For example, it was mentioned that smartphone applications and text messaging programs could be developed that focus on health tips, exercise tips, and dietary assessment. Participants in this session recommended creating tools to increase survivors’ ability to advocate for themselves and leveraging community resources, such as gyms. As interventions are developed, participants emphasized, it is important for survivors to be included in their design.

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Employment Issues The Employment Issues session explored interventions for ASPC and YACS who have experienced setbacks in their career because of their cancer and its treatment. The session was facilitated by 2 LIVESTRONG staff, one of whom is a cancer survivor. The main challenges identified were neurocognitive deficits in survivors who received CNS treatments as children, lower levels of education or vocational training, and lower employment rates than the rest of the population. The group noted several current approaches to addressing employment issues. Some survivorship clinics, such as the George Washington University Thriving After Cancer Program and the City of Hope Childhood Cancer Survivorship Clinic, provide additional vocational programs to help with employment needs. Participants discussed that pharmacological interventions and cognitive remediation and rehabilitation may also be available. It was noted that the LIVESTRONG Young Adult Alliance brings together over 140 organizations serving these populations, some of which offer employment resources and services (eg, Cancer Legal Resource Center, Cancer and Careers), and that the Patient Advocate Foundation also provides free case management related to employment and other issues. Participants also pointed out that organizations and online communities, such as Imerman Angels and Planet Cancer, provide peer support that may be helpful for coping with employment concerns.

Participants pointed out that organizations and online communities provide peer support that may be helpful for coping with employment concerns. The group recommended that the following improvements be made in research, education, and services across several sectors. Employers represent a large group that could provide critical information to understand survivors’ employment needs, and they could play a role in helping to address these needs. Research findings might validate the need to add vocational and career services to multidisciplinary survivorship programs. Participants indicated that studying cancer survivors’ needs related to workplace accommodations can help identify effective, reasonable requests specific to ASPC and YACS returning to work. With this research, it was discussed that an educational curriculum can be developed so employers know how to implement reasonable accommodations for their AYA survivor employees. The group also noted that educational

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resources can be developed to inform survivors how to address employment issues.

Community-Level Barriers Facilitated by 2 cancer survivors, 1 from the Tigerlily Foundation and 1 a psychosocial researcher from the University of Michigan Comprehensive Cancer Center, the Community-Level Barriers breakout explored ways to generate potential interventions that could be implemented from within target communities to optimize quality of life. Community organizations fill a critical gap in providing survivorship information, support, and resources, particularly for populations that have limited access to the healthcare system, such as AYAs who are uninsured or underinsured. Participants indicated that when survivors have clinical visits, providers must understand the life situation of the patient to develop an SCP that addresses the whole person and acknowledges individual circumstances. Collaborations can leverage resources across community, academic, government, and private entities. The group identified community events (eg, health fairs, mobile screenings, symposia) to help address access issues and provide education that may not be readily available to the target population. Centralized regional resource inventories, such as American Cancer Society’s resource database, should include ASPC- and YACS-specific resources to increase awareness about existing resources. New family-based interventions and awareness campaigns may also be useful for promoting health in the community. CONCLUSION Increasing attention has been given to the unique needs of AYAs who have a history of cancer. The long-term and late effects of the disease and its treatment are often compounded by the developmental stage of people in this age range. Entering adulthood without adequate support systems can impact whether one receives appropriate posttreatment care, which can impact morbidity and mortality. While there are many challenges in survivorship care in general, there are many barriers specific to ASPC and YACS that must be addressed to optimize health for these AYA survivors. The meeting findings offer several implications for practice and research. Connecting various issues to create a more complete picture of AYA survivorship, the breakout sessions outlined key challenges identified by survivors and caregivers, clinicians, researchers, and other healthcare professionals and also noted existing resources and efforts. Understanding the multiple challenges across these domains can help healthcare professionals better care for ASPC and YACS. Several recommendations have implications for clinical services and support programs, such as

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transitional care models or increased peer support. The recommendations also provide guidance to help researchers and program developers create more tailored, age-appropriate interventions to address ASPC- and YACS-specific needs, such as those related to employment or healthy behaviors. Finally, the symposium results demonstrate the importance of survivor engagement in the identification and implementation of care improvements. g Acknowledgments: The GWCI Cancer Survivorship Research Symposium was supported by The Pfizer Foundation, Pfizer Inc, EagleBank Foundation, The George Washington University Hospital Women’s Board, the American Cancer Society, LIVESTRONG, and the National Cancer Institute (supported by Award Number R13CA159823). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health. Disclosures: Mandi Pratt-Chapman, MA, and Anne Willis, MA, report receiving grants from The Pfizer Foundation, Pfizer Inc. Jennifer Bretsch, MS, and Steven R. Patierno, PhD, have nothing to disclose. Corresponding author: Mandi Pratt-Chapman, MA, The George Washington Cancer Institute, 2030 M Street, Suite 4069, Washington, DC; e-mail: mandi@gwu.edu.

REFERENCES

1. US Department of Health and Human Services. Closing the gap: research and care imperatives for adolescents and young adults with cancer. http://planning.cancer.gov/library/AYAO_PRG_Report_2006_FINAL.pdf. Accessed February 9, 2012. 2. National Cancer Institute. Childhood cancers. www.cancer.gov/cancer topics/factsheet/Sites-Types/childhood. Accessed February 9, 2012. 3. American Cancer Society. Cancer facts & figures 2012. www.cancer. org/acs/groups/content/@epidemiologysurveilance/documents/document/ac spc-031941.pdf. Accessed February 9, 2012. 4. National Cancer Institute. The Childhood Cancer Survivor Study: an overview. www.cancer.gov/cancertopics/coping/ccss. Accessed February 9, 2012. 5. Nathan PC, Greenberg ML, Ness KK, et al. Medical care in long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. J Clin Oncol. 2008;26(27):4401-4409. 6. Geiger AM, Castellino SM. Delineating the age ranges used to define adolescents and young adults [correspondence]. J Clin Oncol. 2011;29:e492-e493. 7. Tonorezos ES, Oeffinger KC. Research challenges in adolescent and young adult cancer survivor research. Cancer. 2011;117(suppl 10):2295-2300. 8. Soliman H, Agresta SV. Current issues in adolescent and young adult cancer survivorship. Cancer Control. 2008;15(1):55-62. 9. Oeffinger KC, Hudson MM, Landier W. Survivorship: childhood cancer survivors. Prim Care. 2009;36(4):743-780. 10. Oeffinger KC, Mertens AC, Hudson MM, et al. Health care of young adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Ann Fam Med. 2004;2(1):61-70. 11. Oeffinger KC. Longitudinal risk-based health care for adult survivors of childhood cancer. Curr Probl Cancer. 2003;27(3):143-167. 12. Zebrack BJ. Psychological, social, and behavioral issues for young adults with cancer. Cancer. 2011;117(suppl 10):2289-2294. 13. Zebrack BJ, Zeltzer LK, Whitton J, et al. Psychological outcomes in long-term survivors of childhood leukemia, Hodgkin’s disease, and nonHodgkin’s lymphoma: a report from the Childhood Cancer Survivor Study. Pediatrics. 2002;110:42-52.

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14. Langeveld NE, Stam H, Grootenhuis MA, Last BF. Quality of life in young adult survivors of childhood cancer. Support Care Cancer. 2002;10(8):579-600. 15. Santacroce SJ, Lee YL. Uncertainty, posttraumatic stress, and health behavior in young adult childhood cancer survivors. Nurs Res. 2006;55(4):259-266. 16. Barrera M, Teall T, Barr R, et al. Health related quality of life in adolescent and young adult survivors of lower extremity bone tumors. Pediatr Blood Cancer. 2012;58(2):265-273. 17. Brandt J, Dietrich S, Meissner J, et al. Quality of life of long-term survivors with Hodgkin lymphoma after high-dose chemotherapy, autologous stem cell transplantation, and conventional chemotherapy. Leukemia Lymphoma. 2010;51(11):2012-2020. 18. Langeveld NE, Grootenhuis MA, Voûte PA, et al. Posttraumatic stress symptoms in adult survivors of childhood cancer. Pediatr Blood Cancer. 2004;42(7):604-610. 19. Rourke MT, Hobbie WL, Schwartz L, Kazak AE. Posttraumatic stress disorder (PTSD) in young adult survivors of childhood cancer. Pediatr Blood Cancer. 2007;49(2):177-182. 20. Carpentier MY, Fortenberry JD. Romantic and sexual relationships, body image, and fertility in adolescent and young adult testicular cancer survivors: a review of the literature. J Adolesc Health. 2010;47(2):115-125. 21. Carpentier MY, Fortenberry JD, Ott MA, et al. Perceptions of masculinity and self-image in adolescent and young adult testicular cancer survivors: implications for romantic and sexual relationships. Psychooncology. 2011;20(7):738-745. 22. Thompson AL, Marsland AL, Marshal MP, Tersak JM. Romantic relationships of emerging adult survivors of childhood cancer. Psychooncology. 2009;18(7):767-774. 23. Tindle D, Denver K, Lilley F. Identity, image, and sexuality in young adults with cancer. Semin Oncol. 2009;36(3):281-288. 24. Nathan PC, Ford JS, Henderson TO, et al. Health behaviors, medical care, and interventions to promote healthy living in the Childhood Cancer Survivor Study cohort. J Clin Oncol. 2009;27(14):2363-2373. 25. Hudson MM, Oeffinger KC. Future health of survivors of adolescent and young adult cancer. In: Bleyer WA, Barr RD, eds. Cancer in Adolescents and Young Adults (Pediatric Oncology). Heidelberg, Germany: Springer-Verlag; 2007:451-467. 26. Demark-Wahnefried W, Werner C, Clipp EC, et al. Survivors of childhood cancer and their guardians. Cancer. 2005;103(10):2171-2180. 27. Tercyak KP, Donze JR, Prahlad S, et al. Multiple behavioral risk factors among adolescent survivors of childhood cancer in the Survivor Health and Resilience Education (SHARE) program. Pediatr Blood Cancer. 2006;47(6):825-830. 28. de Boer AG, Verbeek JH, van Dijk FJ. Adult survivors of childhood cancer and unemployment. Cancer. 2006;107(1):1-11. 29. Pang JW, Friedman DL, Whitton JA, et al. Employment status among adult survivors in the Childhood Cancer Survivor Study. Pediatr Blood Cancer. 2008;50(1):104-110. 30. Kirchhoff AC, Leisenring W, Krull KR, et al. Unemployment among adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Med Care. 2010;48(11):1015-1025. 31. Zebrack BJ, Donahue JE, Gurney JG, et al. Psychometric evaluation of the impact of cancer (IOC-CS) scale for young adult survivors of childhood cancer. Qual Life Res. 2010;19(2):207-218. 32. Grant J, Cranston A, Horsman J, et al. Health status and health-related quality of life in adolescent survivors of cancer in childhood. J Adolesc Health. 2006;38(5):504-510. 33. Emmons KM, Puleo E, Park E, et al. Peer-delivered smoking counseling for childhood cancer survivors increases rate of cessation: the Partnership for Health Study. J Clin Oncol. 2005;23(27):6516-6523. 34. Donze JR, Tercyak KP. The Survivor Health and Resilience Education (SHARE) program: development and evaluation of a health behavior intervention for adolescent survivors of childhood cancer. J Clin Psychol Med Settings. 2006;13(2):161-168. 35. Mays D, Black JD, Mosher RB, et al. Improving short-term sun safety practices among adolescent survivors of childhood cancer: a randomized controlled efficacy trial. J Cancer Surviv. 2011;5(3):247-254. 36. Mays D, Black JD, Mosher RB, et al. Efficacy of the Survivor Health and Resilience Education (SHARE) program to improve bone health behaviors among adolescent survivors of childhood cancer. Ann Behav Med. 2011;42(1):91-98.

JOURNAL OF ONCOLOGY NAVIGATION & SURVIVORSHIP

ANNUAL CONFERENCE

"! ! !

! Professor Rob Coleman, MBBS, MD, FRCP Yorkshire Cancer Research Professor of Medical Oncology Director, Sheffield Cancer Research Centre Associate Director, National Institute for Health Research Cancer Research Network Department of Oncology, Weston Park Hospital Sheffield, United Kingdom Jorge E. Cortes, MD Chair, CML and AML Sections D.B. Lane Cancer Research Distinguished Professor for Leukemia Research Department of Leukemia, Division of Cancer Medicine The University of Texas MD Anderson Cancer Center Houston, TX

* 3:00 pm - 7:00 pm

Registration

5:30 pm - 7:30 pm

Welcome Reception and Exhibits

7:00 am - 8:00 am

Symposium/Product Theater

8:15 am - 8:30 am

Welcome to the Second Annual Conference of the Global Biomarkers Consortiumâ&#x20AC;&#x201D;Setting the Stage for the Meeting Professor Rob Coleman, MBBS, MD, FRCP

8:15 am - 11:45 am

General Session I â&#x20AC;˘ Personalized Medicine in Oncology: Evolution of Cancer Therapy from Nonspecific Cytotoxic Drugs to Targeted Therapies â&#x20AC;˘ Taking Stock of Molecular Oncology Biomarkers â&#x20AC;˘ Genomics â&#x20AC;˘ Bioinformatics â&#x20AC;˘ Validating Biomarkers for Clinical Use in Solid Tumors - Professor Rob Coleman, MBBS, MD, FRCP â&#x20AC;˘ Validating Biomarkers for Clinical Use in Hematologic Malignancies Jorge E. Cortes, MD â&#x20AC;˘ The Challenges of Biomarker-Based Clinical Trials â&#x20AC;˘ Keynote Lecture: Understanding Cancer at the Molecular Level

The only global meeting dedicated to advancing the understanding of value and clinical impact of biomarker research in oncology. Guided by the expertise of leaders in this field, participants will receive a thorough understanding of the current and future landscape of the relevance of tumor biomarkers and how to effectively personalize cancer care in the clinical setting.

This meeting will be directed toward medical oncologists and hematologists, pathologists, geneticists, advanced practice oncology nurses, research nurses, clinical oncology pharmacists, and genetic counselors involved in the management of patients with solid tumors or hematologic malignancies, and interested in the use of molecular tumor biomarkers to help optimize patient care.

12:00 pm - 1:00 pm

Symposium/Product Theater/Exhibits

1:15 pm - 4:30 pm

This activity is jointly sponsored by Medical Learning Institute Inc, Center of Excellence Media, LLC, and Core Principle Solutions, LLC.

General Session II â&#x20AC;˘ Introduction to Case Studies - Jorge E. Cortes, MD â&#x20AC;˘ Case Studies: Optimal, Value-Based Use of Molecular Biomarkers in Oncology: The Expertâ&#x20AC;&#x2122;s Perspective on How I Treat My Patients, Part I â&#x20AC;˘ Lung Cancer â&#x20AC;˘ Breast Cancer â&#x20AC;˘ Multiple Myeloma â&#x20AC;˘ Prostate Cancer â&#x20AC;˘ Leukemia â&#x20AC;˘ Lymphoma â&#x20AC;˘ Panel Discussion: Management Controversies and Accepted Guidelines for the Personalized Management of Solid Tumors and Hematologic Malignancies â&#x20AC;˘ Keynote Lecture: The Medical-Legal Issues Surrounding the Use of Biomarkers in Oncology

4:30 pm - 6:30 pm

Meet the Experts/Networking/Exhibits

Grant requests are currently being reviewed by numerous supporters. Support will be acknowledged prior to the start of the educational activities.

7:00 am - 8:00 am

Symposium/Product Theater

8:15 am - 11:45 am

General Session III â&#x20AC;˘ Review of Saturdayâ&#x20AC;&#x2122;s Presentations and Preview of Today - Jorge E. Cortes, MD â&#x20AC;˘ Case Studies: Optimal, Value-Based Use of Molecular Biomarkers in Oncology: The Expertâ&#x20AC;&#x2122;s Perspective on How I Treat My Patients, Part II â&#x20AC;˘ Melanoma â&#x20AC;˘ Colorectal Cancer and Other GI Malignancies â&#x20AC;˘ MDS â&#x20AC;˘ Myeloproliferative Neoplasms â&#x20AC;˘ Keynote Lecture: Promises and Challenges of Personalized Medicine in Improving Cancer Care â&#x20AC;˘ Tumor Board: Challenging Cases in the Use of Biomarkers in Managing Solid Tumors (attendee-contributed cases) â&#x20AC;˘ Tumor Board: Challenging Cases in the Use of Biomarkers in Managing Hematologic Malignancies (attendee-contributed cases)

12:00 pm - 1:00 pm

Symposium/Product Theater/Exhibits

1:15 pm - 3:00 pm

General Session IV â&#x20AC;˘ Keynote Lecture: Making Personalized Medicine a Reality: The Realization of Genomic Medicine â&#x20AC;˘ The Future of Personalized Medicine: Measuring Clinical Outcomes â&#x20AC;˘ Cost-Effective Technologies That Can Drive Therapeutic Decision Making â&#x20AC;˘ Regulatory Perspectives on PMO â&#x20AC;˘ PMO: The Payerâ&#x20AC;&#x2122;s Perspective â&#x20AC;˘ Panel Discussion: Can We Afford PMO? A Value-Based Analysis â&#x20AC;˘ Practical Considerations in Incorporating PMO into Everyday Cinical Management â&#x20AC;˘ Reimbursement Challenges â&#x20AC;˘ Closing Remarks

3:00 pm

Departures

Upon completion of this activity, the participant will be able to: â&#x20AC;˘ Assess emerging data and recent advances in the discovery of molecular biomarkers and their impact on the treatment of patients with solid tumors or hematologic malignancies â&#x20AC;˘ Discuss the role of molecular biomarkers in designing personalized therapy for patients with solid tumors or hematologic malignancies â&#x20AC;˘ Outline the practical aspects of integrating molecular biomarkers into everyday clinical practice in the treatment of patients with cancer

The Medical Learning Institute Inc designates this live activity for a maximum of 12.5 AMA PRA Category 1 Creditsâ&#x201E;˘. Physicians should claim only the credit commensurate with the extent of their participation in the activity. This activity has been planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education through the joint sponsorship of the Medical Learning Institute Inc and the Center of Excellence Media, LLC. The Medical Learning Institute Inc is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

Medical Learning Institute Inc Provider approved by the California Board of Registered Nursing, Provider Number 15106, for 12.5 contact hours.

The Medical Learning Institute Inc is accredited by the Accreditation Council for Pharmacy Education as a provider of continuing pharmacy education. Completion of this knowledge-based activity provides for 12.5 contact hours (1.25 CEUs) of continuing pharmacy education credit. The Universal Activity Number for this activity is (To be determined).

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P O

PERSONALIZED MMEDICINE IN ONCOLOGY

ADDRESSING DISPARITIES

Navigation Needs for Breast Health and Breast Cancer Populations in Low- and Middle-Income Countries Lillie D. Shockney, RN, BS, MAS Johns Hopkins University, Baltimore, Maryland

reast cancer remains the most feared disease by all women, unrelated to their race, ethnicity, or age. Among major cancers, cancer of the breast is the most common cancer in women in the United States. It is the second most common cause of death and the third most frequent cancer in the world, after lung and stomach cancer, but it is by far the most common type of cancer among women worldwide.1 Globally, there are 1.3 million women diagnosed with breast cancer annually. More than 11 million of them over the next 20 years will die of this disease.2 This equates into someone being diagnosed every 29 seconds and a woman dying every 69 seconds. These statistics may actually be underreported since not all countries have tumor registries for reporting the incidence of cancers that occur within their population. There is consensus that in developing countries most breast cancer patients present at a younger age and with a more advanced stage of the disease compared with patients in developed countries.3,4 Certain difficulties and barriers to treatment are found specifically in developing countries. Resources for breast cancer treatment may be incredibly limited.5 Solutions will need to be country specific. The estimated mortality incidence ratios are generally lower in developed countries. More than 55% of breast cancer–related deaths occur in the middle- and lowerincome countries.6 Educational, cultural, and logistical issues and other barriers can prevent the availability and delivery of high-quality care to underserved patients.7 Race, ethnicity, and socioeconomic status are social factors that also shape cancer outcomes.8 This article provides an in-depth look at the need for patient navigation specifically within low- and middle-income countries as it relates to having women educated, screened, diagnosed, and treated for breast cancer. Given that breast health and breast cancer patient navigation began in the United States in the early 1990s targeting underserved women, we can learn from several decades of experience and see what components may apply to other countries confronting delays in diagnosis and treatment that result in high morbidity and mortality rates.

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BACKGROUND, DEFINITION, AND GOALS OF PATIENT NAVIGATION PERFORMED BY LAYPEOPLE AND/OR ONCOLOGY NURSES IN THE UNITED STATES We know from our experience in the United States that the burden of cancer is not equally distributed with respect to factors such as race and ethnicity, socioeconomic status, and nativity. These social factors can and do directly influence morbidity and mortality since they have an impact on the disease stage at diagnosis, prognosis, and clinical outcomes. A disproportionate burden of disease falls upon racial and ethnic minorities, especially those medically underserved and disadvantaged.8,9 Patient navigation in cancer care refers to individualized assistance offered to patients, families, and caregivers to help overcome healthcare system barriers and facilitate timely access to quality medical and psychosocial care. Cancer patient navigation works with a patient from prediagnosis through all phases of the cancer experience.10 Understanding the history of navigation and how it has evolved over time provides information as to how it can best be applied to the middle- and lower-income countries today. Navigators differ from other cancer support personnel in their orientation toward flexible problem solving to overcome perceived barriers to care rather than the provision of a predefined set of services.7 In the late 1970s and early 1980s, the prospective payment system (PPS) was implemented to help reduce healthcare costs related to inpatient stays.11 Each day of a patient’s hospitalization had to be medically justified for it to be a covered (ie, reimbursable) service by insurers such as Medicare, Medicaid, and other third-party payers. Utilization review (UR) nurses were employed by insurers to review medical records retrospectively and identify any days of hospitalization that lacked (apparent) medical necessity. Such days would be “carved out” of the covered services for inpatient hospital stays, causing concerns for hospitals regarding reimbursement for care. Because people other than physicians were scrutinizing the necessity of

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healthcare interventions, including length of hospitalizations, relationships among UR nurses, physicians, and hospitals often were adversarial.12 This process was not related to the underserved patient, yet it provided the roots and foundation for nurse navigation 2 decades later.13 By the late 1980s, the process of medical record review changed to concurrent chart review and was renamed utilization management (UM). The objective of concurrent review was to identify delays in treatment or discharge from the hospital because of inefficiencies within the healthcare system. Hospitals across the country employed their own teams of UM nurses to review medical records during patients’ hospital stays and communicate with physicians and healthcare teams when more documentation was necessary to justify additional hospital days. The UM nurses, employed by the hospitals, identified specific inefficiencies and worked with healthcare teams to improve care delivery and subsequent reimbursement by insurers for hospitalizations. These “barriers to treatment or barriers to discharge from the hospital” became the sole focus of this work.14

During the implementation of case management in patient care delivery, a physician at Harlem Hospital, Dr Harold Freeman, coined the phrase “patient navigation.” During the 1980s and 1990s, another type of UM nurse, hired by third-party payers, was also in hospitals. These nurses conducted independent chart reviews and evaluated care delivery and length of hospital stays. They interacted with hospital-based UM teams rather than contacting physicians directly. The most common reasons for delays in discharge and prolonged hospital stays were difficulties obtaining patient transfers to facilities with lower levels of care (eg, a skilled nursing facility or rehabilitation hospital) or delays in scheduling ancillary tests (eg, radiology tests being unavailable on weekends). Although some improvements in the efficiency of care delivery were achieved, they were not systematically applied to benefit all patients. Also, relationships among independent UM nurses, attending physicians, and hospital management often remained adversarial.15 In the early 1990s, the concept of “case management” was introduced as another way to increase the efficiency of healthcare delivery. The philosophy and application of case management were quite different from UR and UM. Case managers most often were nurses who worked direct-

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ly with healthcare teams caring for specific patient populations (eg, cardiovascular accidents, oncology care, diabetes care, cardiac bypass surgery). The specific populations were identified as requiring complex or expensive care or requiring coordination of care over time. The goals of case management were to improve efficiency, increase adherence to treatment recommendations, provide links for patients to needed resources within the hospital and the local community, and ensure that care was effective, safe, and patient centered.13 Prevention of readmissions was key. Prevention of overutilization of healthcare resources in any setting was a primary goal. Most physicians viewed nurse case managers as critical team members and the first “navigator,” keeping patients on a clinical pathway. Finally, the case manager and patient were participating with the care team. The responsibilities of oncology nurse case managers included addressing barriers to timely care delivery, facilitating communication among members of the healthcare team and the patients and families, educating patients about their illnesses and treatments, addressing psychosocial and financial issues that could impact or delay care, arranging for timely consultations, promoting adherence to cancer surveillance and medications associated with cancer treatment, and planning for the next phase of care (eg, discharge, additional services such as rehabilitation, transfer to a facility with a lower level of care, self-management at home, and/or home care). At the same time hospitals were implementing the case manager role, third-party payers were also using case managers to ensure that care was provided in a timely and costeffective manner. Subsequent studies validated the effectiveness of case management, and the role is still in place for many insurance companies and hospitals.16 During the implementation of case management in patient care delivery, a physician at Harlem Hospital, Dr Harold Freeman, coined the phrase “patient navigation.”17 He saw that an individual, commonly a layperson from within a community, could serve as a patient navigator whose efforts could help address disparities in healthcare and improve access to care for underserved people. For example, patient navigators could help improve access to mammography for African American women and facilitate earlier diagnosis of breast cancer.17 Additionally, Freeman saw patient navigators as responsible for educating the community about the importance of cancer screening. The goal of patient navigation was to facilitate timely access to high-quality cancer care in a culturally sensitive manner for all patients.18 Concerned about the high mortality rate among breast cancer patients being seen at Harlem Hospital, he developed the concept of patient navigation, striving to reduce breast cancer mortality due to myths, cultural barriers,

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transportation barriers, financial barriers, fear, etc. Case workers, referred to as patient navigators, were trained to do community outreach, such as arranging for transportation and eliminating other barriers to accessing screening mammograms, which proved successful in reducing mortality and morbidity from breast cancer. This approach was also replicated for other common cancers that were deemed survivable if diagnosed at an early stage.19 The use of patient navigators has continued to grow and evolve over time and still does to this day. The training and competencies for performing navigation have also developed, going beyond the lay navigator concept originally created and expanding into the fields of social work and nursing. So, though from a historical perspective patient navigation began with a focus on gaining access to screening and care among the underserved population, oncology nurse navigatorsâ&#x20AC;&#x201D;previously known as case managers, breast health educator nurses, or UM nursesâ&#x20AC;&#x201D;began addressing the barriers to diagnosis and treatment and eventually expanded into community outreach to help provide easier access to screening and subsequent care and treatment. This resulted in the 2 navigation processes dovetailing with one another in the early 2000s (Table). There is no universally agreed upon definition of navigation today. Most definitions and actual functions of someone performing the job have concentrated on barrierfocused identification and resolution.7 For a navigation program to be successful in fulfilling its goals, it must encompass the navigation processes beginning with community outreach and awareness, screening, prediagnosis, diagnosis, all phases of treatment, survivorship, surveillance, healthy lifestyle promotion, and for those who succumb to this disease, end-of-life issues. As it specifically relates to middle- and lower-income countries where resources are limited, navigation must include some components of UM, case management, education, community outreach, barrier assessment, resource referral, and psychosocial support.13 Not all of these functions, however, need to be performed by 1 person, such as a nurse. Different individuals may be employed to perform specific servicefocused tasks, based on their training, knowledge, and expertise. This means that UM also needs to be a core component of identifying the correct individual to fulfill specific role(s), being watchful to not overutilize or underutilize healthcare resources, including manpower resources. There may be case managers, nurse navigators, lay navigators, counselors, community health workers, doctors, nurse practitioners, and others, including volunteers from the community.7 It is of importance to note, too, that particular services provided by navigators depend on the barriers they identify and the strategies they use to eliminate or

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reduce those barriers.7,19,20 Community outreach workers (laypersons) may focus on adherence to screening or the practice of certain lifestyle behaviors to reduce cancer risk, whereas a nurse navigator may be directly involved in the care of the patient and take a proactive role in assessing her needs and helping to ensure that she receives treatment. The navigation program Dr Freeman established at Harlem Hospital focused specifically on high volumes of stage III and IV breast cancer patients with a known poor prognosis who were part of a community with low-income and medically underserved minorities. That program, developed in the early 1990s, targeted perceived barriers caused by mistrust as well as healthcare system complexity by training lay people to provide one-on-one follow-up and case management.19

Note, too, that particular services provided by navigators depend on the barriers they identify and the strategies they use to eliminate or reduce those barriers. Over time and with the support of grant funding, others have also taken on the charge of addressing disparities as a way to increase early detection and therefore increase breast cancer survival. Some programs have focused on educational outreach and screening referrals as a way to improve access for patients. Other programs have utilized bilingual and bicultural navigators to address perceived barriers associated with language and culture.21 What has been learned from the various navigation models in the United States is that navigation is associated with improved rates of screening and follow-up, lower clinical stage at presentation and initial diagnosis, and greater patient satisfaction.22

THE IMPORTANCE OF A COMPREHENSIVE AND TAILORED NAVIGATION PROGRAM Cancer patient navigation can and should take on different forms in different communities, as dictated by the needs of the patients, their family, and their community. Within each patient navigation program, the healthcare system, community system, navigators, consumers, and related entities should ensure that they have agreed upon how patient navigation will be defined and operationalized.23 Patient navigation needs to be provided by culturally competent professionals or peers in a variety of settings, depending on the complexity of the situation. The navigator can work within the healthcare system or outside the

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Table

History Over Time of Navigation and How It Was Applied for Underinsured and Insured Breast Health and Breast Cancer Patients

Patient Population Insured Patients

1970s UR inpatients

1980s

1990s

UM inpatients Case management/ RN navigation

7-day hospital 5-day hospital Mastectomies w/o for mastectomy for mastectomy reconstruction patients patients converted to ambulatory surgery Underserved Patients

High mortality

Low screening

Community outreach

2000s

2012-Present

RN navigation

Case management/ RN & patient navigation

Across continuum Prediagnosis through survivorship Community outreach

Community outreach

Increased screening Increased screening Increased screening Patient navigators

Patient navigators

Case workers

Advocacy organizations

A few barrier resources

More barrier resources

Expansion in resources More research

Resources

State grants

Advocacy grants

Mammogram mobile

Taxi vouchers

Culturally targeted Culturally targeted Culturally targeted education education education Discount drugs

Discount drugs

Financial assistance Financial assistance

healthcare system but in close collaboration with providers and the community. The design of the cancer patient navigation system is engineered to be directed by, and to meet, the needs of the patient and the family in the context of the community and the healthcare environment.23 As there were evolving efforts implemented to reduce overutilization of medical resources of insured patients while still helping to ensure that patients received the care they needed in the right and most cost-effective medical setting, there were also efforts taking place to focus on health disparities with a goal to promote earlier detection

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Child care

Housecleaning

that would save more lives. As we look at the needs of middle- and low-income countries, both processes, case management and patient navigation, will be needed for a program to be successful. Given the limited resources for screening, diagnosis, and treatment currently available in many low- and middle-income countries, it is critically important to develop a breast cancer program that encompasses education about breast cancer awareness and promotes early detection, as well as helps ensure appropriate utilization of medical resources. Ironically, this combines the theories of utilization management, case management,

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THE NAVIGATOR ROLE IN BREAST CANCER CARE TODAY The mission of patient navigation in breast cancer care has extended beyond addressing the needs of underserved populations or facilitating screening and diagnosis; its goal is to navigate all patients throughout the cancer continuum. Begining in the mid to late 1990s, funding for breast cancer patients came from cancer organizations and other advocacy groups (eg, Avon Foundation, American Cancer Society, Susan G. Komen for the Cure, National Breast Cancer Foundation). Through grant-supported navigation programs, increased numbers of underserved patients have been reached and navigated through their diagnosis and treatment of breast cancer.24,25 In most cases, the role of patient navigator has been filled by nurses, but in some cases, by social workers and/or laypeople (Figure).26 In some settings, the roles of case manager and patient navigator are blended into 1 job. Due to fragmentation in care, driven greatly by third-party payers and where they do or do not approve diagnostics and treatment to be delivered, the need for coordination of cancer care continues to be a priority for nurse navigators. Without this process, breast cancer patients may not receive treatment in keeping with the National Comprehensive Cancer Network (NCCN) treatment guidelines, which describe the most evidence-based treatment aligned with good clinical outcomes. Treatment in

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Figure Navigator Types Other 5%

and community outreach, patient education, barrier assessment, resource referrals, and psychosocial support together into 1 navigation program. A report by the Trans-Health and Human Services Cancer Health Disparities Progress Review Group identified patient navigation programs as an important resource for the elimination of cancer health disparities in the United States.20 The goal of patient navigation to reduce health disparities in the United States was adopted by the National Cancer Institute in 2006. The Cancer Patient Navigation Act was created to help ensure that patients with cancer received high-quality, coordinated care. Navigators (without the Act defining training or educational requirements to serve in these roles) were to guide patients through the physical, emotional, and financial challenges that come with a cancer diagnosis. Although the actual Cancer Patient Navigation Act became law in 2005, funds were not invested into the development and implementation of navigation programs until 2009. What cancer centers saw as most important was to provide a navigation process to all patients, unrelated to their socioeconomic status.10 At a global level, similar navigation acts are needed to further help launch improvements in breast cancer diagnosis and treatment around the world.

Nonclinical 13% Social Worker 7%

Registered Nurse 55%

Advanced Practice Nurse 20%

Adapted from Shockney L.26

keeping with the NCCN guidelines is achievable for underserved patients in the United States when they are given access to cancer centers for their diagnosis and treatment. When we look at the needs of underserved women in middle- and low-income countries, however, it may not be realistic to expect them to receive treatment that matches the evidence-based standard of care. We need to look at what is feasible and determine how effective treatment may be achieved based on the resources currently available, as we strive to obtain or create the resources needed to help develop appropriate treatment in the future.

LEARNING FROM NAVIGATION EFFORTS CONDUCTED IN THE UNITED STATES WITH THE UNDERSERVED POPULATION When we are discussing minorities in the United States, we are usually referring to African American, Hispanic/ Latino, and the American Indian/Alaska Native in our society. And underserved women are those who have a decreased income and socioeconomic status, lower education level, commonly lack health insurance, and have limited access to healthcare in general. These patient populations are particularly challenging when facing the diagnosis and treatment of breast cancer. Although it is known that underserved women continue to present with later stage breast cancer (stages III and IV), it has become apparent through laboratory research

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that not all breast cancers, even when comparing stage for stage, are alike.27 There are biological differences among subsets of breast cancer patients from various cultures and ethnicities that warrant further research so that personalized treatment plans, based on targeted biologic therapies, can improve survival for minority and underserved women. Couple this issue with cultural differences and it’s clear that the navigation needs of these specific patient populations require special navigation skills and knowledge, with the goal for women diagnosed with breast cancer to become long-term survivors who are living a healthy and happy life. Barriers that prevent optimal breast cancer treatment for minority and underserved populations have been studied with some consistency and depth over the last 3 decades. Low rates of adjuvant therapy being successfully administered to patients as well as long delays in initiation of treatment contribute to higher mortality rates for these women.28 A review of the literature regarding barriers for these patient groups indicates that barriers are related to 3 categories—patient; physician; healthcare system. Let’s look at each category.29

The role of the cancer patient navigator is to identify and eliminate barriers to getting the right care, at the right time, and by the right person. Patient-Related Barriers These barriers include low socioeconomic status, lower level of education, limited or no access to healthcare, and cultural or belief systems issues. A low socioeconomic status has been noted to directly and independently contribute to a higher mortality rate.28 Among African American women who have breast cancer, the percentage of patients who live at the poverty level is more than twice as high as that of white women who have this disease (29% vs 12%).8,30 Similar data have been noted among Hispanics, Native Americans, and women living in rural areas of the United States.31 Women who did not complete high school have a lower compliance rate with screening mammography than those who did graduate from high school. Also, the need to maintain a steady job, take care of children, and minimize any unnecessary expenses (such as a copayment) all factor into the problems navigators experience with getting patients to do the right thing for themselves. We should never underestimate the unique cultural and

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belief systems that prevent a timely diagnosis and subsequent treatment. There are women who believe that by ignoring the problem (a breast mass), the symptoms will go away on their own. Spiritual beliefs can steer a patient into feeling convinced that a higher power will heal her, therefore she believes she does not need cancer treatment. It is common in Hispanic and African American communities to feel that family comes before all other things. This too can result in delays in diagnosis and treatment. And of course language barriers are a hindrance when we are not able to explain to the patient why early diagnosis and completion of treatment are so important.

Physician-Related Barriers Communication, personal bias, limited education—these barriers are a little less obvious. Cultural differences can make the communication process difficult and frustrating. Some physicians don’t recommend mammography screenings due in part to assumptions that these patient populations are so noncompliant that it isn’t worth the time to try to persuade the patients to comply. Physicians in rural areas may not be up to date regarding treatment (ie, lumpectomy is equal to mastectomy from a survival perspective).32,33 Healthcare System–Related Barriers The biggest barrier is having to deal with patients who are uninsured or underinsured. Lower income (poverty level) limits the access to needed resources for receiving routine cancer screening and wellness care. If a patient can schedule a screening mammogram, the wait time may be long. The patient, who may have been willing originally to come in for screening, may change her mind and lose the inspiration to use healthcare access.29 THE CHALLENGE FOR NAVIGATING WOMEN FOR BREAST HEALTH AND BREAST CANCER CARE IN MIDDLE- AND LOW-INCOME COUNTRIES The role of the cancer patient navigator is to identify and eliminate barriers that prevent individuals from getting the right care, at the right time, and by the right person. Whether that involves educating a person about the need for timely screening, reducing fear and nullifying myths about breast cancer, helping someone access health insurance or low-cost screenings, finding transportation to treatment, arranging alternate child care while a parent receives care, helping a person access information about treatment options, or connecting to a support group, the navigator helps patients find and get the care they need.23 By reducing or eliminating barriers to care, navigators help individuals receive the screening and diagnostic tests they require. With early identification of a cancer, and early treatment, morbidity and mortality can be reduced.23

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When we consider applying this concept in middle- and low-income countries, we must recognize that the right care, at the right time, and by the right person may need to be altered initially until the needed resources are created or provided. Lower levels of health literacy or education that may contribute to fears of cancer screening or diagnosis, cultural orientations that contribute to lack of trust of doctors or medical institutions, attitudes of fatalism about cancer, logistical barriers, and other cultural barriers can be difficult to surmount.7 Navigation programs seek to reduce these disparities 1 barrier at a time, individually for each patient as well as systematically for the population seen and treated. It is known from our experience in the United States that a variety of barriers impede prevention, screening and early detection, follow-up of suspicious findings, and aggressive treatment of disease among the underserved population. Lower levels of education or health literacy, fears of screening or diagnosis, cultural orientation or fatalistic views of cancer, logistics associated with access to care and lack of transportation, child-care needs, clinic schedules, living in a rural setting, and other barriers, as well as not reporting a warning sign of a breast health problem they self-identify, result in women not getting screened.34 The most common barriers experienced by underserved patients relate to10: • Finances and economics • Language and culture • Communication • Healthcare system complexity and/or fragmentation • Transportation • Bias based on culture/race/age • Fear

CASE STUDY: NIGERIA’S CHALLENGES IN MANAGING BREAST CANCER A team of researchers set out to investigate the challenges, severity, and other factors that influenced the clinical outcomes of breast cancer patients.36 They focused specifically on a teaching hospital within Nigeria. The study took 8 years to complete (1996-2003) and provided some key information that served as baseline data from which to measure improvements in the care delivery system. The mean duration of symptoms a woman noted was 11.2 months (9 days-7 years). Pain in patients (47%) was reported as the most common symptom bringing them into the healthcare system. Localized cancer was found in the upper outer quadrant of the breast 40% of the time, whereas whole breast involvement occurred 26% of the time. Advanced breast cancer (defined as having loco-regional features) was present 74% of the time. Thirty-nine percent of women had fungating tumors, and metastatic disease was clinically evident 13% of the time. Eighty percent of patients had stage III or IV breast cancer at the time of initial diagnosis. Treatment compliance was poor with the majority of patients dead or lost to follow-up within a year of diagnosis.36

CASE STUDY: BARRIERS TO TREATMENT IN SOUTH AFRICA A study conducted in Capetown, South Africa, demonstrated some of the various barriers described above.35 Only 6% of black breast cancer patients accepted and received treatment. There were several different barriers identified that included cultural, religious, and social factors. Specific reasons given for refusing treatment included (1) The patient believes that she has been poisoned by an evil sorcerer and that she requires special indigenous African medicines. She believes that Western treatment such as surgery will cause the cancer to spread and kill her; (2) Decision-making may involve various family members, including older, more conservative family members; (3) There are financial barriers. Patients are not keen to be viewed as sick because it will impact their ability to work and take care of their children. They don’t want to be labeled by the community as being a person with cancer.4,35

In determining the causes of late presentation, it was learned that the problem was multifactorial in nature and included religious beliefs, prolonged denial, lack of awareness, and ill-informed perceptions about breast cancer. Some patients utilized alternative means of treatment, most specifically herbal and spiritual treatment options that were readily available to them. There was also lack of knowledge among the healthcare providers about breast cancer and an environment within the hospital itself that was not inviting and caring. The number 1 barrier however was fear of mastectomy surgery.36,37 It was confirmed as an outcome of this study that extensive staging workups, including bone scans, CT scans, xrays, and MRIs, did not contribute to changing the management of patients with early stage or advanced stage breast cancer. This was an important utilization management issue to discover. Advanced breast cancer posed a huge clinical management problem due to the extensiveness of the lesions, which oftentimes were not operable and

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Experience in the US shows that a variety of barriers impede prevention, early detection, and aggressive treatment among the underserved population.

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commonly were infected and necrotic. The conclusion these researchers drew was that early detection of breast cancer may be quite difficult in developing counties as it requires early diagnosis through screening or women reporting symptoms very early on when tumors are small. The Nigerian doctors reported that the prerequisite for early diagnosis would be the implementation of appropriate support for women seeking care that would include appropriate and easy access to affordable diagnostic tests and treatments, which are commonly lacking. Culturally sensitive and appropriately targeted education about breast cancer, tailored to the specific needs of the population, was required and considered to be a woman’s right to receive.36

The Nigerian doctors reported that the prerequisite for early diagnosis would be the implementation of appropriate support for women seeking care. STEPS AND ISSUES TO CONSIDER WHEN DESIGNING AND IMPLEMENTING A BREAST CANCER NAVIGATION PROGRAM IN DEVELOPING COUNTRIES: START WITH A NEEDS ASSESSMENT AND GAP ANALYSIS A needs assessment is an important activity to perform before an effective and efficient navigation program can be implemented. It identifies for the oncology team the specific needs of patients while providing a sense of direction and a set of priorities. A needs assessment will provide baseline information needed before the team embarks on the construction of a comprehensive navigation program to serve the needs of women in these environmental and cultural settings. This can be challenging, as there may be limited information available. Knowing the population base and some information about them is useful however. This includes information about the current incidence of breast cancer; some volume information by stage, age distribution, and treatment options currently available; as well as treatment options actually utilized. The gap analysis provides information regarding where there are holes in the system that need to be filled, whether they be in screening, treatment, barriers to care, or other resources missing or limited currently. Although it is oftentimes difficult to perform a comprehensive needs assessment, remembering that cancer impacts a patient’s life will enable the people conducting the needs assessment to include a variety of issues associated with patient support needs. Unaddressed needs result in adverse outcomes.38 Understanding the culture and belief systems is part of

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the information needed from the outset and provides the beginning steps to identification of the barriers to screening, diagnosis, and treatment. What do women value? (eg, making sure they are there for their children and have food to feed them).What do men value? (eg, being able to provide shelter for their families). There are a variety of validated needs assessment tools available. They include but are not limited to the following38: • Cancer Care Monitor • Concerns Checklist • Needs Evaluation Questionnaire • Needs Near the End-of-Life Care Screening Tool • Oncology Clinic Patient Checklist • Patient Needs Assessment Tool • Problems and Needs in Palliative Care Questionnaire • Problem Checklist • Supportive Care Needs Survey • Sheffield Profile for Assessment and Referral to Care • Symptoms and Concerns Checklist • Psychosocial Needs Inventory Recruit a trained, experienced breast cancer nurse navigator to take a leadership role in overseeing the development and implementation of the navigation program. Formulate a list of barriers to diagnosis and treatment and what resources, if any, currently exist or are needed to overcome these barriers (eg, transportation, healthcare myths, no radiation facilities, no mammography equipment, outdated equipment, no one trained in reading the results of screening or diagnostic tests). What current method of communication is available to reach people within each community and across the country? How effective have these methods been in reaching women to date about any issues of importance (ie, other health-risk issues)? What social gatherings occur and when? What telecommunications methods are available? What screening is currently available and how accessible is it for women? If transportation is a major barrier, is it possible to offer a mobile screening and diagnostic program? What methods are currently used for diagnosing breastcancer (eg, excisional biopsies vs core biopsies vs large fungating tumors that are obvious to diagnose)? What pathology services are available and what is the completion time? Also, what is the level of accuracy and specificity? Identify what breast cancer medical personnel exist, where they are located, and what their specialties are. Is there adequate staffing of these medical personnel? Are they clustered in 1 area of the country? Do they work currently as a multidisciplinary team or as totally independent disciplines? What volume of patients are they currently seeing? Are they trusted individuals within the community? Something that has also been learned from exploring

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the needs in developing countries is that simple technology transfer is not very useful and that different treatment protocols will likely need to be developed. These eventual treatment protocols will need to come from research initiatives. Referral guidelines and clinical care guidelines must be developed in a way to be auditable. Most breast cancer treatment does not require a high-level physician specialist; the best example perhaps being treatment with hormonal therapies.39 Identify what treatments are available and where and to what degree treatment is currently utilized. This includes surgical options, chemotherapy drugs, radiation equipment, reconstruction/flap coverage options, hormonal therapies, biologic targeted therapies, pain medications, rehabilitation services, nursing care, and palliative care. What financial barriers exist to obtaining treatments? Identify locations where treatment can be administered. In countries with limited resources, chemotherapy can be administered in a centralized infusion center, for example, by nurses given approval to prescribe supportive drugs.39 And although there may be a preference for certain chemotherapy drugs (such as taxanes and anthracyclines), from a utilization management perspective it may not be cost-effective to provide them. A decision may be made to employ more affordable chemotherapy regimens that are still valid from a treatment perspective, such as cytocan, methotrexate, and fluorouracil (CMF). Hormonal therapy, specifically tamoxifen, is considered the single most effective anticancer therapy available in the world for breast cancer. A challenge, however, is being able to perform the needed hormone receptor tests on the breast cancer specimen to determine this prognostic factor so that only those patients who would benefit from it (those with hormone receptor–positive tumors) would be receiving it. These are examples of tailored treatment made possible by research. Aromatase inhibitors are likely too expensive for use in these settings. In some situations, surgical or radiation oophorectomy may be an affordable option in poorer countries. Radiation, which can require many weeks of treatment, must also be assessed in regard to its availability and need. Research should be conducted to determine if shorter courses of radiation therapy may suffice, making this treatment available for more patients. Last but not least is the need for palliative care, including medications and palliative radiation therapy, with priority given to those with locally advanced and metastatic disease.35 Identify individuals within the community who are trusted—people of faith, local doctors or nurses, or other community leaders. Recruit their help in identifying potential breast cancer survivors doing relatively well posttreatment (if they exist) as well as families who have lost family members to breast cancer. • Provide certification classes for laypeople to become

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certified breast health educators, modifying the American Cancer Society training content to fit the needs of the community being served (ie, statistics, screening methods, diagnostic methods available, how to access care, what treatments are available). These individuals become the core of lay navigators for community outreach and awareness. • Develop a core group of breast cancer survivors to speak, spreading the word about the importance of early detection as well as raising awareness of resources available for diagnosis and treatment; family members who have lost a loved one should speak to promote the importance of earlier detection and treatment. These individuals are 1 component of community outreach being conducted by lay navigators. Identify what resources remain needed (transportation is the number 1 barrier to cancer care globally). Identify ways to create these needed resources or alternatives to eliminate these barriers. For example, if a patient can’t come for dressing changes, teach the family how to do this at home. Identify what treatments can be “taken to” the patient. Mammography mobile for screening works well in some rural areas. An alternative for formal exercise is hanging laundry on a clothesline.

And although there may be a preference for certain chemotherapy drugs (such as taxanes and anthracyclines), it may not be cost-effective to provide them. What funding sources are accessible to obtain needed supplies for diagnosis and treatments? Where are they located and how much in dollars and equipment is available? Identify a champion within the country for support of reducing mortality and morbidity from breast cancer. This may require meeting with a health minister to present needs. In reviewing the problems of breast cancer in middle- and low-income countries, it appears that oncologists can play a vital role through international associations by pressuring governments to supply resources and equipment and by insisting on training programs for medical personnel. Oncologists can also be fundamental to the creation of research initiatives to further learn about breast cancer physiologically and from a needs assessment perspective.4,5,40 Think creatively when considering obtaining supplies for specific needs. Work with advocacy organizations, and “alternative” companies (ie, a disposal diaper company might provide diapers to use for dressings for women with locally advanced fungating tumors).

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Create educational materials that are clear, culturally appropriate, and at the correct educational level for those who will be reading or hearing (via video or audio) the information. This includes providing information that explains the role of navigators in supporting women with breast abnormalities during diagnosis and treatment. Develop measures that will help to determine if you are making a difference as intended. These measures should reflect back to your goals for the breast health/breast cancer program. We cannot manage what we do not measure. So measurement is key. Clinical outcome measures and process as well as structure measures are helpful to consider here. Are you seeing more women diagnosed at an earlier stage of breast cancer? Are you recruiting more women to come for screening mammograms? How many women were taught how to perform a breast self-exam compared with the past? How many women received completion of treatment? What barriers were identified and what resources were provided for each specific case? Do you have written goals and objectives that have measurable outcomes? Are there clear job descriptions and measurable outcomes for each person involved in the navigation process?

Create educational materials that are clear, culturally appropriate, and at the correct educational level for those who will be reading or hearing the information. Identify cancer organizations you can learn from and partner with so that you are not reinventing the wheel. These include the Academy of Oncology Nurse Navigators (AONN), The Breast Health Global Initiative (BHGI), and Union for International Cancer Control (UICC), as well as Susan G. Komen for the Cure International. Collaboration can facilitate accomplishments happening sooner when there are shared goals. Training and education of those who will be involved with the navigation program can be readily learned from affiliating with the AONN.

WHAT ADDITIONAL CHALLENGES DO WE FACE IN THE FUTURE? As more targeted drugs are developed for the treatment of breast cancer, more expense will be incurred because these new drugs, though exciting and promising in saving and extending more lives, are going to be much more costly than treatments used to date. There will also likely be more oral medication usage, which can simplify the administration process by eliminating intravenous treatments.

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However adherence to oral medications will likely be a major barrier to treatment. We are experiencing a shortage of oncology specialists and primary care physicians in the United States. Such shortages also occur in other parts of the world. And until there is a cure or true prevention, we need to anticipate the incidence of the disease continuing to increase globally.

CONCLUSION It can appear to be a mammoth task to take on the early diagnosis and treatment of breast cancer in countries with limited resources and low- to middle-income status. However, by applying what we have learned through navigation efforts established in the United States over the past 4 decades, we likely will be able to make successful headway globally in improving the experience for women diagnosed with breast cancer. Creating a needs assessment and gap analysis; identifying the barriers specific to the women at risk for breast cancer; developing and implementing a comprehensive step-by-step action plan that is measurable and supported by evidence-based research; and forming a navigation team, led by a breast cancer nurse navigator and supported by a champion for breast cancer (such as an oncologist) can provide the tools and help to develop the resources needed in each country to make a difference for women diagnosed in the future. Navigation is truly a multifaceted process that includes patient education, community outreach, early diagnosis, utilization management, case management, appropriate treatment, survivorship, psychosocial care, and end-of-life needs. Bringing together the right people at the right time and in the right manner, all focused on the same goal, will enable more developing countries to achieve successes like those that have been achieved in the United States over the past several decades. And even in the United States, our work is far from done. It is likely that by working collegially with other organizations, we can learn from the work of developing countries as well. g Disclosure: Lillie D. Shockney, RN, BS, MAS, is AONN Program Director. Corresponding author: Lillie D. Shockney, RN, BS, MAS Johns Hopkins University 600 North Wolfe Street, Carnegie 683 Baltimore, MD 21287 E-mail shockney@jhmi.edu

REFERENCES

1. Gilani GM, Kamal S, Akhter AS. A differential study of breast cancer patients in Punjab, Pakistan. J Pak Med Assoc. 2003;53(10):478-481. 2. Our global reach. Susan G. Komen for the Cure Web site. http:// ww5.komen.org/AboutUs/GlobalReach.html. Accessed February 6, 2013.

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3. Malik AM, Pathan R, Shaikh NA, et al. Pattern of presentation and management of ca breast in developing countries. There is a lot to do. J Pak Med Assoc. 2010;60(9):718-721. 4. Murray EM. Medical and radiation oncology for breast cancer in developing countries with particular reference to locally advanced breast cancer. World J Surg. 2003;27(8):924-927. 5. Jones SB. Cancer in the developing world: a call to action. BMJ. 1999;319(7208):505-508. 6. Jakesz R. Breast cancer in developing countries: challenges for multidisciplinary care [editorial]. Breast Care (Basel). 2008;3(1):4-5. 7. Dohan D, Schrag D. Using navigators to improve care of underserved patients. Cancer. 2005;104(4):848-855. 8. Lannin DR, Mathews HF, Mitchell J, et al. Influence of socioeconomic and cultural factors on racial differences in late-stage presentation of breast cancer. JAMA. 1998;279(22):1801-1807. 9. Smedley BD, Stith AY, Nelson AR, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: National Academy Press; 2003. 10. Shockney L. Becoming a Breast Cancer Nurse Navigator. Sudbury, MA: Jones & Bartlett; 2011. 11. Sloan FA, Morrisey A, Valvona J. Effects of the Medicare prospective payment system on hospital cost containment: an early appraisal. Milbank Q. 1988;66(2):191-220. 12. Feldstein PJ, Wickizer TM, Wheeler JR. Private cost containment. The effects of utilization review programs on health care use and expenditures. N Engl J Med. 1988;318:1310-1314. 13. Shockney L. Evolution of patient navigation. Clin J Oncol Nurs. 2010;14(4):405-407. 14. Wang TJ, Mort EA, Nordberg P, et al. A utilization management intervention to reduce unnecessary testing in the coronary care unit. Arch Intern Med. 2002;162(16):1885-1890. 15. Restuccia JD. The evolution of hospital utilization review methods in the United States. Int J Qual Health Care. 1995;7(3):253-260. 16. Goodwin JS, Satish S, Anderson ET, et al. Effect of nurse case management on the treatment of older women with breast cancer. J Am Geriatr Soc. 2003;51(9):1252-1259. 17. Freeman HP, Chu KC. Determinants of cancer disparities: barriers to cancer screening, diagnosis, and treatment. Surg Oncol Clin N Am. 2005;14(4):655-669. 18. About us. Harold P. Freeman Patient Navigation Institute Web site. http://www.hpfreemanpni.org/about-us/. Accessed February 26, 2013. 19. Freeman HP, Muth BJ, Kerner JF. Expanding access to cancer screening and clinical follow-up among the medically underserved. Cancer Pract. 1995;3(1):19-30. 20. Trans-HHS Cancer Health Disparities Progress Review Group. Making cancer health disparities history. US Department of Health and Human Services; 2004. http://planning.cancer.gov/library/2004chdprg.pdf. Accessed February 26, 2013. 21. Centers for Medicare and Medicaid Services. Evidence Report and Evidence-Based Recommendations. Cancer Prevention and Treatment W Demonstrations for Ethnic and Racial Minorities. US Department of Health and Human Services; 2003. http://www.cms.gov/Medicare/

Demonstration-Projects/DemoProjectsEvalRpts/downloads/CPTD_ Brandeis_Report.pdf. Accessed February 26, 2013. 22. Frelix GD, Rosenblatt R, Solomon M, et al. Breast cancer screening in underserved women in the Bronx. J Natl Med Assoc. 1999;91(4):195-200. 23. C-Change Web site. http://www.cancerpatientnavigation.org/index. html. Accessed January 28, 2013. 24. The Avon breast cancer crusade. Avon Foundation for Women Web site. http://www.avonfoundation.org/causes/our-impact/breast-cancer-2012/. Accessed February 12, 2013. 25. Patient navigator program. National Breast Cancer Foundation Web site. http://www.nationalbreastcancer.org/breast-cancer-patient-navigator. Accessed February 12, 2013. 26. Shockney L. The role of patient navigation in improving breast cancer diagnosis and treatment. http://portal.bhgi.org/GlobalPortfolio/globalsum mit/Documents/Presentations/SHOCKNEY.pdf. Accessed March 8, 2013. 27. Hunter CP, Redmond CK, Chen VW, et al. Breast cancer: factors associated with stage at diagnosis in black and white women. Black/White Cancer Survival Study Group. J Natl Cancer Inst. 1993;85(14):1129-1137. 28. Kerner JF. Breast cancer prevention and control among the medically underserved. Breast Cancer Res Treat. 1996;40(1):1-9. 29. Shockney L. Navigating the underserved and minority breast cancer patients—the challenges and solutions. Journal of Oncology Navigation and Survivorship. http://www.aonnonline.org/education/clinical-commentary/ 655-navigating-the-undeserved-and-minority-breast-cancer-patients-challenges-and-solutions#.UUxfZ-hqZV [subscription required]. Accessed March 22, 2013. 30. Hurd TC, James T, Foster JM. Factors that affect breast cancer treatment: underserved and minority populations. Surg Oncol N Am. 2005;14(1):199-130. 31. Hiatt RA, Pasick RJ. Unsolved problems in early breast cancer detection: focus on the underserved. Breast Cancer Res Treat. 1996;40(1):37-51. 32. Hatzell TA, Ricketts TC, Tropman SE, et al. Rural physicians’ understanding of the state-of-the-art in breast, colon and rectum cancer treatment. Cancer Causes Control. 1999;10(4):261-267. 33. Ayanian JZ, Guadagnoli E. Variations in breast cancer treatment by patient and provider characteristic. Breast Cancer Res Treat. 1996;40(1):65-74. 34. Breen N, Kessler LG, Brown ML. Breast cancer control among the underserved–an overview. Breast Cancer Res Treat. 1996;40(1):105-115. 35. Wright SV. An investigation into the causes of absconding among black African breast cancer patients. S Afr Med J. 1997;87:1540-1543. 36. Adesunkanmi ARK, Lawal OO, Adelusola KA, et al. The severity, outcome and challenges of breast cancer in Nigeria. Breast. 2006;15(3):399-409. 37. Ajekigbe AT. Fear of mastectomy: the most common factor responsible for late presentation of carcinoma of the breast in Nigeria. Clin Oncol (R Coll Radiol). 1991;3(2):78-80. 38. Shim EJ, Lee KS, Park JH, et al. Comprehensive needs assessment tool in cancer (CNAT): the development and validation. Support Care Cancer. 2011;19(12):1957-1968. 39. Sikora K. Developing a global strategy for cancer. Eur J Cancer. 1999;35(1):24-31. 40. Cavalli F. The Djerba statement: just another declaration, or a new beginning [editorial]? Ann Oncol. 1995;6(10):963-964.

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